Scared Dad... Things seem to be getting worse.

[planningguy]

I wanted to start by saying I have been reading these forums for a while, and have been impressed by the compassion, friendship, and courage shown by many of the posters on this board. I have a feeling that for all of the individuals who post, there are many more who find hope and support just by reading. Please forgive the missive length post, but this is also serving a a way for me to vent my spleen a bit and wrap my brain around what is happening.

I am a 31 year old male, married, father of three (9, 7, and 3 years old). Like many who read these boards, I am concerned that I may have ALS. My problems started following a blood infection two years ago that left me hospitalized for a week (tetanus shot plus vincamycin). About a year after the infection I started noticing a burning sensation and tingling in my arms and legs (particularly my right arm). I ran through a battery of tests with my GP, and he concluded that I had pernicious anemia based on pretty low B-12 levels and the presence of a relevant anti-body in my bloodstream. He also prescribed Lexapro for anxiety, which I later abandoned because it made me feel too fatigued.

After balancing my B-12 levels, I noticed the symptoms continue along with chest pains and intense fatigue (went to ER twice because I thought I was having a heart attack). My GP did a full internal workup: ultrasound of major organs, echocardiogram, electrocardiogram, stress test, 24 hour electrocardiogram and blood pressure monitoring. I developed a painful stiff neck, and had an X-Ray and MRI of my C-Span, which came back clear.

I became frustrated with my GP because, although commenting offhand that the symptoms might be neuropathy related to the B-12 deficiency, he resisted referring me to a neurologist. I went to a local friend who was an ENT and had him refer me to his choice in neurologists. Thankfully, his office was in town (in our region many of our specialists are circuit riders who are only in town 1 or 2 days a week, if that). The neurologist did a much better job of listening to symptom description, and after testing reflexes and gait, decided he would do an EMG and nerve conduction study. He also reviewed my C-Span MRI and blessed it as "normal".

A couple of weeks later when I arrived to do my nerve conduction test, the neurologist stated that my results had no abnormalities, and that he felt the EMG was unnecessary. Diagnosis: lingering general neuropathy due to the B-12 deficiency and possible muscle inflammation compressing a nerve. Short story, take it easy and come back in a couple month or so.

During that month of waiting, I was fortunate enough to have a rollover car accident. My neurologist associated any changes in condition (basically more neck pain and continued tingling and burning in the arms and legs) with the accident, but opted not to follow up with any x-rays or MRI's. He referred me to a wonderful physical therapist, but in the four weeks we have been working together are quickly finding out that only a small part of what I feel is related to the neck. I have a follow up with the neurologist on July 9th (I tried to get it moved up but he is booked solid).

Some subtle things that i thought were anxiety related before have begun to intensify, and have left me terrified. My nostrils have flattened to the point that my wife has commented that my nose looks different (even colleagues at work have noticed). The difficulty in swallowing that I attributed to acid reflux has gotten to the point where it has put me off food, and I have a constantly sore and tight throat. I occasionally misspeak words, though if I carefully repeat them I usually say them to my satisfaction.

What started as stiffness in my wrists and ankles has now turned into the feeling that my calves are wrapped in cling film, and I feel cramps both there and in my biceps (the left one in particular) and jaw, as well as twitching throughout my body. My tongue tingles off and on, and I have this internal buzzing vibration that almost feels like my teeth would chatter if I put them together. Finally, the fatigue has wiped me out so badly that I've taken to going to bed at 9:30 or 10:00 and waking up at 7:00AM feeling as though I almost cannot get out of bed (last night the cramping and muscle sensations kept me up all night).

I took one last shot at my GP, and he (actually his PA) in frustration threw out the last series of tests she could think of: magnesium, glucose tolerance, sprue... all of which came back negative. I am currently in the process of trying to get into the Mayo Scottsdale Campus (we several family members in the area). My brother went there for treatment of an injury he received that lead to his own series of blood infections. When I see the neurologist on the 9th I am going to beg for a contrast MRI of both the brain and the C-Span, as well as that he conduct another nerve conduction test and the EMG.

So after writing a post that has now folded back on itself (thank you for your patience)my questions are:

1. Naturally, do these signs and symptoms sound like ALS? They seem like they are exploding all over the body, but the nose, swallowing/throat, and speaking issues have me really worried.

2. Could they be anything else? It seems that physicians here can be coaxed into pursuing other avenues, but only if approached directly by an apparently informed person.

3. If the Mayo, declines to see me. What are some other good diagnostic centers to consider? I've heard good things about UCLA, but also heard that you practically have to be a donor to get an appointment.


Again sorry for the long post. I am just a scared dad that is at wits end, and these symptoms seem to be getting steadily worse.

Robert

[Al]

Hi Robert. First, age is on your side. Very few people your age get ALS. I've never heard anyone anywhere mention nose issues. Rolling a car over can cause a lot to go wrong in the C-spine which could explain a lot of things. There are other neuropathies that it could be. Lymme disease mimics ALS. If you go to www.alsa.org and click on In Your Community there is a state by state listing of Clinics. I'd try to get the EMG/NCV tests done at the best clinic you can get in to in a reasonable length of time to set your mind at ease.
AL.

[wright]

Hey Robert

The thing that stands out like a sore thumb is the onset of symptoms that followed your blood infection. It sure sounds like it can be a post-viral autoimmune syndrome. You'd be amazed at how prevalent they are and how the autoantibodies that are produced love to "eat" peripheral nerves. The burning sensation is a big symptom of neuropathy as is the "stocking feeling" in your feet and calves. You might soon be feeling like you have a tight glove on both hands, too (another classic symptom of peripheral neuropathy). As far as your other symptoms: they too can be explained by something autoimmune. I certainly wouldn't be jumping the gun when it comes to ALS. Go to a good neuro and voice your concerns and I'm sure they will do a battery of tests (including an EMG, as Al suggested) to get to the bottom of your condition. Take care in the meantime and certainly keep us posted.

[patricia1]

Robert
Reading your post brings back memories of my symptoms starting after a tetnus shot and if you read the insert that comes with the vial of tetnus it states neuroliogical side effects which my neuro said could have caused my problem as they are looking into vaccinations of soldiers and ALS. I got tingling of my head and face after the shot and swelling of my arm for months.Too much of a coinincidence for me.



Pat

[planningguy]

Thank you for the quick replies and sound advice (Al, I've come to appreciate your practicality and realism as I've read your other posts). I have been trying not to get overanxious, but just when I calm myself down I will fixate on some other little item like having trouble pronoucing a word or syllable. My wife has been pretty good about keeping me in check, but I wear her out sometimes.

In the mean time I'm going to research some options closer to home (The http://www.alsa.org looks very helpful... It looks like Colorado might have some possibilities. If anyone has some insight in that regard I would appreciate it). I think a big part of my struggle has been a lack resources (Both in information and the fact that my state has the same population as many large cities).

I will keep you posted as I learn more, and thanks again.

Robert

[laurel]

Hi Robert,
I just attended a GBS and CIDP conference. My husband has CIDP. Guillain-Barre Syndrome was talked about in depth. Many people developed GBS and CIDP after vaccinations. Many people who had GBS later developed CIDP. Many people with CIDP who never had GBS can correlate onset of CIDP symptoms with receiving vaccinations or having had something like campylobacter. Burning and tingling are sensory symptoms that are often exhibited with the peripheral neuropathies like CIDP. My husband had negative nerve conduction studies done, and was basically dismissed as having no serious issues. He then developed wasting and atrophy of his right hand. Had more nerve conduction and EMG a year later. Diagnosed with carpal tunnel and had surgery. More wasting and almost total loss of use of right hand. Saw a hand surgeon on 2nd referral and was diagnosed with progressive muscle atrophy. Finally was referred to a neuromuscular disease unit neurologist after developing foot drop as well. Had EMG and nerve conduction of all 4 limbs, lumbar puncture and sensory motor testing by Athena Labs. Diagnosed with CIDP MADSAM variant. Started on IVIG in September 2007 and has had it monthly since. He is improving. We wasted nearly 3 years of being misdiagnosed by not going to a neuromuscular disease unit after the less than satisfactory nerve conduction tests with the first neurologist. From what we learned, it takes a real pro to do the nerve conduction studies and EMG and usually those pro's are in a neuromuscular disease unit. Don't waste time and get yourself to a neuromuscular disease unit for proper diagnosis. Good luck.
Laurel

[planningguy]

Laurel, thank you for the piece of information on CIDP. I have had some changes in bowel and bladder urgency (Lost another 10 lbs in a week, though I still have at least one bowel movement a day), and doing some additional reading it can be a symptom. I guess my question would be can it effect swallowing and the tongue (Having a bad time with the "sh" sound, feels like the underside of my tongue is constantly being pulled on)?

Had a disappointing visit with the GP today. I did convince him to let me do a swallow test w/ barium swallow, and a brain MRI. His first comment was, "You're losing weight, that's good." This was after the nurse was startled to see that I had dropped 10 lbs in a week since she last weighed me (I'm down about 35lbs all together, but started a little bit on the high side). After reviewing everything we've done thus far, he asked me a couple of of very general questions about family history of MS, and mumbled a handful of things about possibly being auto-immune related.

What really got me down was when he started making disparaging remarks about how neurologists weren't really clinicians because they don't have a good enough internal medicine background, and that it impeded their diagnostic capabilities. Yeah, I can understand that they are specialists... got that :? In any case he threw a bunch of additional thyroid tests and an ultrasound on top, then said he was prescribing something to help take care of the "restless legs." Sigh... Note to self, next time move to location with view of the mountains and superior medical facilities.

Does anyone have a recommendation for a neuromuscular unit in the Rocky Mountain region? Looking at alsa.org it looks like the U of U medical center is my best bet in terms of proximity (Actually it looks like the only Rocky Mountain option).

Robert

[wright]

Hello again Robert

I just re-read your initial thread and saw that they found elevated levels of antibodies in your blood work (I missed it the first time I read it). That is certainly another sign of an autoimmune problem (and again, almost everyone of your symptoms can be attributed to such a problem). I'm surprised it isn't being investigated further. I think you should press that issue as well as pressing for an EMG. I'm sure if you find a good neuromuscular clinic (someone on here will point you in the right direction), they will be doing that EMG and conducting further tests to find out what is wrong with you. If you have more questions, please feel free.

P.S. CIDP is an autoimmune disease, so laurel might be on the right track. Your symptoms correlate with that, much more than they do with ALS.

P.S.S. You didn't mention fasics or atrophy: Do you have any?

[planningguy]

Wright,

In answer to your questions, although I do feel weakness in my limbs (right arm and right leg in particular), I don't think I notice any atrophy. The caveat being that I get swelling and fluid retention in my legs and ankles and that can make them look funny in any light, plus I've lost a lot of weight making it hard to know what was there to start with. I do have a lot of stiffness in the wrists and ankles, and my ankles hate it when I try to flex the front portion of my foot (raising my toes and front part of my soles).

My right forearm is about 1-1.5 cm different from my left at its widest point, but I think that's within the normal tolerences for slight body assymetry (I freaked a little until we measured my wife's forearms and found she had a similiar difference which would make for a larger ratio given her size).

I also do get fasciculations in my limbs and face. They seem to occur most when I am at rest, or in conjuction with muscle soreness. For the most part they are where I experience symptoms, though I get occasional ones in my back and shoulders. Magnesium deficiency was ruled out. The fasciculations tend to occur once or twice in an area then leave, except in my legs where I can get a good old fashioned bag o worms twitch storm going on.

Thank you for the follow up thoughts.

Robert

[planningguy]

Oh another quick update. I spoke with a nurse at the University of Utah MND Clinic, and she recommended that I try to schedule an appointment with Dr. Bromberg, the director there, who is an ALS specialist. The only trick is I need a referral, and a copy of my medical records. I might need to finish this latest round of probing by the GP before I can convince him, or wait for my neurology consult next month :(

[laurel]

Hi Robert,
One thing I've learned about CIDP is that it can affect just about everything. My husband when he was in the midst of his worst moments, he did slur his s sounds, but I can't remember for sure about swallowing issues. I think he was having some issues at one time. He has minor elevation of protein in his CSF. His right forearm is about two inches less in diameter compared to his left, but he had major wasting and atrophy of his right hand and forearm before he was diagnosed properly. First symptom seemed to be weakening of his pincher grip on his right hand. The weakness crept up on him and then the atrophy. I remember gasping when he rolled up his sleeve one day. The atrophy was profound and that is what made me pick up the phone and book him into a specialty referral clinic. We're in Canada so we have socialized medicine with lengthy waits for specialists. But we have a speciality referral clinic where a person can get an appt. within a couple of days by paying about $900. We did this and that got us on the right track of him being properly diagnosed. With the first neurologist we just assumed that because he was a neurologist he would know what was going on. Not so at all. Even his nerve testing etc. was real slack assed compared to the thoroughness at the neuromuscular disease unit. i.e. only testing of one limb, antiquated equipment, the testing took maybe 20 minutes with the first guy, and it took at least a couple of hours at the neuromuscular disease unit. Lots of info. out there about CIDP patients often having irritable bowel issues, and my husband does have this too. Also, hubby has restless legs. When he was at his worst, he had lots of fasciculations happening in his forearm and the side of his thumb. As he has received treatment, he only rarely has them now. But he also had major hand spasms at one time too. I wonder if the difference in your forearm sizes is normal? When you look at my husband's right forearm, it is very apparent that something is not right--even lay people recognize that damage has happened to him. And had he been properly diagnosed in the beginning he would not have irreparable muscle wasting.
Laurel

[planningguy]

Laurel - Thank you for the additional information on CIDP. It's given me a lot of hope in terms of there still being a number of possibilities as others are ruled out.

I am trying everything to swing to make it to U of U's MND unit soon. I think that it is my best bet for a timely quality neurological evaluation. I had a friend offer to get me in to see someone that helped his physician brother-in-law in Denver, but there's only a three hour difference between going there and Salt Lake. From everything I've read here the NMD specialization makes all the difference in the quality of the diagnostic.

Robert

[laurel]

You are welcome Robert. I know how scared we were in the beginning that my husband had ALS. And even when he got into the NMD unit he did have an initial differential diagnosis of ALS until they completed all the testing and evaluated his response to IVIG. I still don't rest easy and I probably won't until another year or so passes with him continuing to respond to treatment. Good luck getting a speedy top rate assessment, and please write and let us know what happened. So many people write with their concerns, and we don't hear how things turn out. I'm saying a prayer that you too will have something other than ALS.
Laurel

[fmarino]

Quick question for you Laurel.

You said that your husband's right forearm is 2 inches smaller than his left forearm: is the right forearm the only one that has atrophy? In other words, are you defining a loss of 2 inches in your husband's right forearm, as profound atrophy?

The reason I ask, is that I lost about an inch off of my forearm in a matter of 6 weeks and it doesn't look profound to me. Actually, no one can tell, unless I methodically compare my right forearm to my left forearm. Is your husband's atrophy uniform or are there "divets" in his arm that make it look more profound.

I also have the burning pain that Robert has. Did your husband have any type of pain with his CIDP?

[laurel]

Hello Fmarino,
His right forearm and right hand have profound wasting. If you look at Al's hand atrophy pictures, my husband's hand looks similar. i.e. if you look at the base of his thumb (I call his drum stick <g>) it has no flesh or muscle and his index finger looks small in diameter. The wasting and atrophy occurred over a 2 year period roughly. He has no divets in his arm. Looking at his arm you would think he had polio or something like that--it looks like a handicapped person's arm --sorry to be so inept in describing it and no offense to other handicapped people meant. It just looks small and out of proportion. He has had some burning, tingling, and restless legs, muscle spasm in the hand, and tight feeling in the top of his thighs. He fatigues easily, had some slurring of speech, did some word searching that was noticeable before he got treatment, and he would sit lethargically and stare when he was at his worst. Also, he would never remember little things that I had told him maybe an hour or two before. He would insist that I hadn't said what I had said. I tell him it was like he was a zombie for a few months. It scared the bejabbers out of me. There is much much improvement, but he certainly isn't back to square one. I notice little things that I don't often bring up with him as I don't want to discourage him. He seems a little jerky and incoordinated with his hand movements of the right arm and does things putting a glass down too hard and it will shatter, brakes a little jerkily when coming to a stop sign (his right leg was affected and he had a brief foot drop episode last summer before starting IVIG), and his memory isn't as sharp. And the fatigue is improved, but he has to really pace himself when doing chores around out little farm. He used to mow pastures for 3 or 4 hours at a time, but now can only go for an hour or so and needs to have a break. But the IVIG has improved things to about 75% of where they were before. He is considering a bit of a diagnostic enigma still. Some of his EMG and nerve conductions aren't exactly fitting CIDP MADSAM criteria, but clinical examination fits. His response to the IVIG has stunned his neurologist concerning his regaining use of the hand and the strength in it. It still looks much the same as prior to treatment, but like I mentioned he couldn't hold a coffee cup or use cutlery prior to treatment. Now he uses hoof knives to trim our horses feet which takes pretty good strength and coordination as they tend to snatch their feet when they're bored and hoof wall is tough stuff. When the neurologist looks at the wasted appearance and then feels his grip now she just shakes her head in wonder.
Laurel

[planningguy]

Interesting day of ups and downs. Had my brain contrast MRI today. I must have put some kind of urgency into my GP because he called me about three hours after I got done with the results: "Normal." I suppose in one way that's a big blessing, but part of me almost wished the answer was there ("I'll be darned that's what's causing all this, this spot looks like Florida."). Tomorrow I get scoped at both ends ("Yeah, laxative time..."), maybe there will be some answers there.

My physical therapist is an angel. I showed up today and dropped into the chair (bad posture and all), and told her that I felt until these issues were worked out, I didn't think that it was worth either of our time continuing. I asked her if she could put in a call to the neurologist. She took one look at me, called his office, and got me in for Tuesday at 1:00 (after his receptionist told me I could go on the waiting list to see if someone dropped before July 9th). As I got up too leave she asked me if it would be OK to call me in a couple of weeks and see how I was doing. Now I know why she had to drop down to two days a week, her heart's too big for 5 days a week worth of patients.

Hopefully the neurologist will do a quick follow up and feel comfortable referring me to U of U. Fingers crossed.

Robert

[laurel]

Thanks for the update Robert. My fingers are crossed too that you get the referral ASAP.
Laurel

[planningguy]

Endoscopy and colonoscopy came back fine. Turns out I knew the surgeon who was doing it from outside of work (Remember this is a small town). When I went over my symptoms he was a little at a loss for why we were doing the proceedure, but said maybe it would shed some light on the swallowing difficulty. It didn't in the end, but I did get a gift bag from the surgical ward.

This is the first time anyone has ever given me chocolate and pictures of my colon at the same time ;).

Robert

[planningguy]

Rough night last night (Sorry, I know that is relative). My right leg seems to be giving me more trouble than the other limbs, and I spent the night wrestling with cramps and that stretched muscle feeling.

I guess what troubles me the most though is the awkward feeling in my face (mostly nose and palate) and jaw. Since the endoscope ruled out any acid reflux damage the shortness of breath, tight chest, and dry couch have a different meaning for me now. Again it is just a waiting game to get to someone with the expertise to diagnose.

I promised my wife I wouldn't discuss anything until I have a diagnosis of something, but the kids are really starting to clue in to something being wrong (My 9 and 7 year olds are sharper than a whip, and just watched my mother die from terminal cancer this spring). Any advice on assuaging kids fears since I really don't know what's going wrong with my body? I don't want to tramatize them uneedlessly, but then again I don't want to blow it off in such a way that if the worst case scenario does come true, I've betrayed their trust.

Robert

[rose]

Robert, The tests you had were good to rule out more common ailments, but they are not as specific as you need. The brain mri for example, would rule out a tumor or MS, but the type you probably need is one that focuses on the brain stem.

One thing that is going to take time to accomplish, and is something you can start on right away if you haven't already, is getting your hands on the actual films that were run, especially the MRI, as when you do get your referral to a major teaching hospital (I'm assuming that is your goal) they are going to want their radiologist to read for themselves, not take another's word for it. That holds true for any biopsies that you had done (?) You'll need to procure the actual slide and take it or have it sent. Plus all of your medial records at any office you were seen in. This all takes time because of that (very annoying to me) HIPPA privacy act. You'll have to sign release forms anywhere you haven't already etc, and then some places won't pull your records while you wait, so that you can just bring them, they'll tell you it will be done by such and such a date, and then you have to follow up to make sure it really happened.

Another thing is to write everything down in chronological order. Mind you the doctors are not going to want you to hand them this! They like to ask their own questions, but it will help you to sort things out for yourself.

See if you can get your primary care doctor, or whatever one you feel the most rapport with to actually make the call for you to where you want referred. It should expedite matters for you.

I have no words of wisdom for how to handle this with your kids, mine are grown and its difficult beyond words even though they're adults. One thing I do find myself saying to my youngest is that it will be ok, even if I'm not. I think that may just be "mom speak" coming into play, but it does seem to help her, maybe because I've said it so many times over the years about other situations.

take care, :)

[laurel]

Hi Robert,
When you describe your nose, it brings to mind a young fellow I met in the hospital a few months ago when my husband was getting his IVIG. I've been trying my best to remember the autoimmune disease that he had, but I can't come up with the name. He did talk about something with his nose called a saddle nose deformity. He was a diagnostic enigma, but did lots of searching on the internet and actually self-diagnosed and took the info. to his doctor. Try googling saddle nose deformities and see if anything fits for you. The young fellow I met had the nose issue and I remember he had major weakness in his limbs, loss of strength in general, and he had lost a lot of weight before being diagnosed. He was getting weekly IVIG for his condition and was improving. But I remember him saying that his nose issues had taken him to hospital and he was admitted promptly as they were worried about respiratory issues developing.
Laurel

[CindyM]

Robert- get them to do a pulmonary function test for the shortness of breath. This one test just may finally give me some answers- it has been going on 2 years now since my first group of symptoms. Also the pulmonary results can indicate the need for breathing assistance, and I am very hopeful that once I start the Bi Pap I will have a better quality of life. Cindy

Oh and get somebody to prescribe some form of quinine for those cramps. At least you will be able to get some rest, then.

[planningguy]

Rose - My plan is to take my full medical packet to the U of U MND clinic MRI's and all. A missing link in between the C-Span MRI and the Brain MRI is something I've been concerned about, but my GP never explained if they covered overlapping areas or not (For some reason my contrast brain MRI seemed much quicker than the C-Span, and it was my impression that the brain took longer). I haven't had many other tests other than the neural conductivity test because they are not available in my town (My neuro can and most likely will do an EMG this follow up). I will probably have my neurologist do the referral since my GP doesn't think that highly of neurologists, and I'm in this too deep to start from square one.

Laurel - The young man didn't have Myasthenia gravis did he? That is one of the possibilities I had read about and was hopeful for because it is treatable, and many of the symptoms replicate those I am experiencing (Albeit my symptoms aren't eleviated by rest anymore, and MG doesn't seem to produce any of the neurological symptoms I feel such as burning and tingling and internal vibration. If I am wrong in that regard someone please correct me.)

CindyM - I am hoping to have a full diagnostic work up at the U of U, including pulmonary function. This odd mixture of what would be upper and lower neuron symptoms baffles and concerns me, but the swallowing and breathing naturally make me the most nervous right now.

[laurel]

Hi Robert,
I think it was some rare vasculitis. It had a name I had never heard of, but back then I did google it and found it. But I've been searching high and low and can't find the one that he had. Here is one article on a vasculitis causing peripheral neuropathy. I'll keep searching for the one young fellow had. I do recall that when he found it on the internet and took the print out into his doctor that she did blood tests that helped confirm it. http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/vasculitis/
Laurel

[laurel]

Hi Robert,
No it wasn't Myasthenia Gravis. It was some rare vasculitis. I am still trying to come up with the name. There are peripeheral neuropathy symptoms in some of the autoimmune vasculitis diseases.
Laurel

[rose]

Robert, what Laurel told you about is really significant because the main thing that stands out with what you describe is that your nose has changed in appearance. You're the only one I've read anywhere talking about something like this. And, now that Laurel said that, I do remember reading about Saddle Nose back when my doctors were thinking I had a autoimmune condition. If it is this, and you could start treatment right away it could have such a good outcome for you! ... oh , and about gathering your info, just try to get all of the originals you can, i.e. actual films instead of reports, actual labs that were run, plus of course transcripts of your doctors notes.

If you do have an autoimmune condition, that means rheumatology, hence, if you go in through a neurology clinic for initial exam, be prepared that the next step could very well be an entirely separate visit to the rheumatology division.

So, if you research what Laurel linked you to, and you feel it is a good fit for your symptoms at all, get yourself in to see a rheumatologist maybe while you're waiting for the big visit as some blood labs, etc, could get started on sooner. good luck :)

[rose]

Hi Robert,
When you describe your nose, it brings to mind a young fellow I met in the hospital a few months ago when my husband was getting his IVIG. I've been trying my best to remember the autoimmune disease that he had, but I can't come up with the name. He did talk about something with his nose called a saddle nose deformity. He was a diagnostic enigma, but did lots of searching on the internet and actually self-diagnosed and took the info. to his doctor. Try googling saddle nose deformities and see if anything fits for you. The young fellow I met had the nose issue and I remember he had major weakness in his limbs, loss of strength in general, and he had lost a lot of weight before being diagnosed. He was getting weekly IVIG for his condition and was improving. But I remember him saying that his nose issues had taken him to hospital and he was admitted promptly as they were worried about respiratory issues developing.
Laurel

Yes, I found the emedicine's description: A saddle-nose deformity is most visibly characterized by a loss of nasal dorsal height.

[planningguy]

Thank you for the additional links. You all continue to keep my mind open to the various possibilities of what I could be experiencing. So many neurological symptoms blend together, and just when I consign myself to an unfixed fate, I learn a little more. My nose is certainly one of the more fun puzzles, although I don't think I am experiencing saddle nose deformity, as the bridge of my nose is still fine (Although isn't it fun to try to research that on the web. I came across more rhinoplasty websites, and realized that even with my nostrils drooping there are still people with snozzes in a lot worse shape than mine).

I had my swallow test today, and although my esophogal (sp?) function is fine there was "significant spasticity in my chewing action." My GP still thinks its acid reflux (even though my endoscopy came back fine with no apparent damage), and wants to put me on even more acid reducers. He based this on the radiologists ability to induce some reflux by putting me on the tilt table (Curiously, the radiologist said the reflux was minor, but the GP called it significant). Luckily the speech pathologist who reviewed the study with the radiologist works well with my neurologist, whom I'll be seeing tomorrow.

I'm trying to keep my hopes up. My right leg seems to be feeling worse for wear. I raced my 7 year old to the car at the park yesterday and almost biffed it. Couple of other quick questions:

1. I've noticed that indentations on my skin (from desks, clothing spiral notebooks etc) seem to stay a lot longer than I can remember. Does this sound familiar to anyone?

2. I'm getting tingling that travels up my thighs, around my groin, and up my lower back. I sense that this can be a common case in neuropathy, but is it really common in ALS too?

Thank you all for your continuing support and insight.

Robert

[planningguy]

Ok... so I had a follow up with the neuro, and now I really have questions + frustration.

The neuro noticed no clinical atrophy or weakness (which I will take as a plus ;P), and so no EMG. He said that the MRI looked good, but that he was seriously contemplating repeating the works just to be sure. Just like the car that starts right up at the mechanic, I did not have any limb fasiculations while he examined me. Reflexes good. A little weakness in the facial muscles around the eyes (right eye in particular).

He, like everyone else, was concerned about the results of the swallow study. However he said since there is no aspiration danger, and since the bulk of the trouble seems to be with thicker foods, he doesn't know what to make of it yet. He said to be careful eating for the time being. He recommended that I see a rheumatologist for the joint stiffness in the wrists and ankles (October 7 is the earliest opening they have), and put me on Provigil for the muscle fatigue/weakness.

My neuro is a really great guy, and one of the more respected doctors in the community, but should I give him another shot, or just escalate to a diagnostic center?

How long typically do you have to feel the effects of weakness/muscle stiffness before noticeable atrophy emerges? In a way I am becoming a lot more hopeful (barring the swallowing and face issues), because I do not have clinically observed atrophy or muscle weakness.

Thanks again,

Robert

[laurel]

Absolutely go ahead with the diagnostic centre. My husband had a nice guy neurologist that he saw for three assessments over about three years. He first said "nothing is abnormal", second visit "you have carpal tunnel", third visit after carpal tunnel surgery "it takes time for nerves to re-grow". By the time hubby saw the neuromuscular disease clinic specialists, he had major wasting and atrophy. And all that muscle wasting isn't fixable. He has regained strength in his hand/arm but still has the profound wasting. He wouldn't have this if he had gone to the specialist clinic in the beginning. And it is always the patient's fault i.e. the neuro. at the neuromuscular clinic was apalled at the wasting and wondered why he had waited for the second opinion. We said that we trusted the first guy and she looked at us like "give your head a shake". Robert it is your body and your future health on the line here. You have something that is a bit of an enigma to your neuro. It likely will not be an enigma to the diagnostic centre. Keep the updates coming please.
It's hard for me to remember how low it took for my husband's arm to appear visibly different and wasted as it crept up on him --probably over a two year period of time.
Laurel

[rose]

It seems like it was Al that said it took two years for the atrophy to be visible for him. Yes, keep pursuing the diagnostic center, and see if any of your doctors can do something about getting you in to see a rheumatologist sooner! My heavens, that is an unreasonable wait! I know its different in bigger cities, but I've never had to wait longer than six weeks to get in for initial appointments with rheumatologists, and the three that I've seen were tops in the field. Keep the ball rolling! and I'm glad your swallow test turned out so well, you've got enough on your plate right now (like the play on words? ) without more trouble being discovered that you weren't aware of. take care, :)

[planningguy]

Laurel and Rose, thank you for the push. Sometimes doctors can talk us into doubting our own determination to get to the bottom of our health issues. The neuro told me to give him a call tomorrow to find out the results of the blood tests, and to let him know how the Provigil is working out. I will just be frank with him and tell him that I am worried, and willing to take the time away and pay for a diagnostic evaluation. My work has been very supportive, and indicated that they would have no problems with me being away for a couple of weeks (I some sick leave, but supervise a division).

Rose, ready access to health care can be a real problem in our region. Most specialists (regardless of their quality) require at least 4-6 weeks to see, and depending on the specialty may take 2 months or more (I love my endodontist, but when I postponed my root canal for the blood infection that put me in the hospital, I could only schedule 4 months out.). Even a trip to the GP takes two weeks unless you are willing to see the PA (though this is probably becoming a lot more common with GP's across the country). I guess the idea is that if it is that serious we will be referred to specialist in a major city like Denver or Salt Lake, who can typically see you faster than any that are within a 2-3 hour drive. It's frustrating, but it doesn't seem like kicking, screaming, or bleeding on the carpet gets you in faster.

Robert

[planningguy]

Yeah the play on words made me smile :).

[Kevinski]

I was officially dx with als after two years ,looked like thats where it was headed but my neurologist who specialises in als is cautious about making the diagnosis and that can only be done when certain criteria is met thru emg and nerve conduction tests.Obviouslly you have something going on ,but dont think lou gehrigs at this point ,it will just add undue stress to you for no reasons.I recommend getting a good neuro guy and let them do there stuff.And dont borrow trouble by thinking ALS at this point.No pt in worrying about things you have no control over and thinking the worse is unproductive for you and your family...Good luck Kevin from Calgary Alberta

[planningguy]

Kevinski, thank you for the message. I try not to dwell on any uncertainties, especially since I have young children, one of which doesn't understand anything beyond "Daddy's a bit sick." At this point there are dozens of possibilities, most of which are treatable, and when addressed won't go much further than what I feel today.

My mother passed away from cancer in May. It was terminal from the diagnosis, and for the kids it was very hard to see the grandma they were closest too slowly weaken as she tried to buy a little more time. They don't need to be imagining the worst on a sunny day.

My wanting to go to a university medical center, is mainly prompted by the ability to drill though diagnostic tests with physicians and staff who see a larger number of neurological cases, and technicians who understand the nuances of specific tests. My neuro is very competent and compassionate, but the rates of incidence for some of these illnesses mean that there might only be a half dozen cases of each type diagnosed in my state in a given year. That combined with the fact that as he refers me to less common specialists, I can be waiting for months at a time while some symptoms seem to slowly get worse.

When I spoke with my neuro he actually sounded a bit eager that I had chosen this route, and that we could get a lot of testing done in a short period of time while consulting with colleagues. Right now his office is working to get me into the University of Utah Neurology Department, which has a muscular disease unit.

Thank you to everyone who has wished me luck. Hopefully here shortly I will be one big step closer to getting to the bottom of this.

Robert

[awieleba]

Hi Robert,

I was reading your thread and could relate to it alot. I seemed to have a lot of problems that occured around (not sure if before or after) a infection when I was in the hospital 3x for a week at a time. I also had a vaccination and was vancomycin. I started with painful/aching wrists and ankles. I also had it in feet and hands. My knee would pop or give out at times. I assumed it was rheumatic in nature and went to rhuemy and all he found was osteo arthritis (slightly, I am 36). During my time in the hosp. I had about every test known to man! I have a feeling in my calf of stiff or jello or tight. I had a hot burning sensation in leg. BUT, i noticed that my nose was little or thinner. When I touch it, it feels bony. I dont know how to explain, other than I also noticed my nose felt different. my ear lopes are also thinner and my earrings dont fit as well. (wierd). I also lost wieght, but lost 10 pounds in a week! I have spent the last month trying to gain it back and i did. The only problem is that i could not gain it back where i normally do, only in my stomach. My legs and arms still thin. I hope not because of weak ab muscles.

Have you noticed your feet or hands getting thinner? Do you have breath shortness?
Have you got your emg yet?

I have lost muscle tone around my eyes also.

My Neuro is checking into all that MG, poly-everything. I have not heard if twitching and pain comes with that? Do your muscle's jerk or move slightly invoulantary? Mine do, it is getting a llittle better or I am getting use to it and do not notice. My left leg is the one bothers me. LUCKILY, no cramping as of yet.

Keep me posted on your situation! I also have 3 young children. They notice that I am not as active as I was. (ie. playing tennis and sports with them).

I feel like alot of what you shared, I can relate. I have more issue's but dont want to go into it all.

Take Care!!!
April

[planningguy]

April,

I have read a little bit about your situation in your other post, and I can empathize with the stress you are feeling. I think its great that you are seeing a neuro with a neuromuscular disease background, and have a rheumatologist in the loop. I am still waiting for my consult to be scheduled with the U of U (prodding the neuro's office every couple of days), and in the mean time trying to avoid gnawing off my own arm.

I do have muscle twitching (especially in my calves where I also get stiffness and some cramping), and will occasionally have involuntary movement (seems to be worse if I'm laying down, though not always). As you have probably gathered from my posts, my nose changing shape has been one of the more baffling things thus far. Going with that is some difficulty chewing and swallowing, and overall stiffness of the neck and jaw (though a lot of my muscles feel stiff these days).

I have shied away from trying to call out atrophy, or whether or not my limbs have thinned out (that includes my face). The main reason for this is even though in my mind they have (particularly my right arm and my legs just below my calves) I really don't have a good reference point, and trying to scale off past photos is a tactic that even my three year old laughs at :-D. I have lost approximately 30 lbs since this started, and we all know that we can never choose where the weight comes from or goes back to. Also, I have had my wife help me with some objective measuring of my arms and legs, and I don't seem to detect any difference. I do have perceived weakness in my limbs to go with the stiffness and cramping, and a little clinical weakness in my face (My eyes in particular).

From what I understand of MG, twitching is not presenting symptom. That being said, like many others in the forum have pitched me some hope and possibilities, let me pitch some your way. If you haven't already read Laurel's information on CIPD, you should. Here is a general link from wikipedia, though there is certainly better information out there (Once Al certifies that I am not trying to hawk time shares or questionable meds the link should appear):

http://en.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyn europathy

Almost any form of neuropathy can cause twitching since the common cause is nerve irritation. You should also check out this link on peripheral neuropathy.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

There are many causes of peripheral neuropathy, including infectious disease and auto-immune response. Many of the symptoms you describe fall into those listed in the link above. PN symptoms can also radiate and ascend with time. Also, I have read in other places that, depending on the underlying cause of the PN, there may be central nervous system involvement as well (The NIH site has a good summary of MMN as well, but if I put too many links in this post, it will never see the light of day).

I hope I've answered your questions, and given you some options to think about. In the mean time good luck with working through all this with the medical folks.

Robert

PS - If they haven't already, make sure they check you for vitamin deficiencies, especially B-12. Its amazing how often this gets overlooked, and it can lead to peripheral neuropathy and fatigue. Pernicious anemia (chronic B-12 deficiency caused by antibodies preventing absorbtion in the stomach lining) can be triggered as part of an immune system response.

[planningguy]

April,

I posted a response to your questions, but they contain a couple of links and will need to be approved by a moderator. Should pop up sometime in the next while or so.

Robert

[Jess]

Hi Robert. I just read your post and it sounds like you have really had a time of it. I can't help as far as ALS symptoms, but can readily recommend the University Hospital (Neurology Center) in Denver. Every Thursday they also have a Muscular Dystrophy Clinic which of course covers ALS among other things. The neurologist I have seen is Dr. Stephen Ringel - supposed to be the best in Colorado and I am greatly impressed with him. Easy to talk to and knowledgeable. I think any of the neurologists there would be good. Let us know what you find out. Jess

[awieleba]

Thanks for your reply!
None of us can dx or predict outcomes but it is nice to dialogue with others that have some major health concerns.I of course, I'm hoping for an autoimmune dx (only on this site would that be good news!).

From my reading so far, brisk refexes dont happen with cidp. I hope that someone in the know will read this and answer that?

PN's, I had a ncv for nerves and it eas clean. So, again unsure if a clean ncv means no PN.

I have had all vitamin/mineral work up due to my colon issue a few months back. The strange thing is that my b12 was abnormally high!? I foregot to ask what that ment, meaning is my body not absorbing? She is running a bunch of immune complex test. I am going to ask for heavy metals. You want to ask that also since you had that tetnus shot. I am concerned about a vaccine I got in a weakend immune state.

You are right about shying away from saying atrophy. I never looked at my body so closely! I do have notable dent/muscle loss around top of ankle that people see. It is slight, If I did not point out, then it would look skinny(the tendon pops out more than other side). And I lost 35 pounds in and out of hosp., so it could be uneven loss and my body is older. Althogh I thought 36yrs old was the new 25!

I do have bad aching neck. My jaw get tired easy but no pain. My joints started popping about a month ago, again could be age.

did you have an emg? please keep me posted, maybe anything that we go through could help each other out.

What does your wife think about all this?

The photo of your daughter is adorable!!! I wish I could figure out how to sp that.

Take care!!!

april

[lostinlouisville]

Hi, I am new around here. I don't really post on other's, but I just empathies with you. Having kids to worry about. I have 7 three older out of the home. I adopted 4, 10, 6, and 4 year old twins. What is happening in my body makes me wonder a lot about the younger ones. I wanted to encourage you to stay strong and love on those babies, {they are babies even when they get married and leave.} I can't really say a lot about the medical end of it but I can tell you Being those kids parent is the most important thing and I am glad you are seeking help with that in mind, they are very lucky to have you care about them that much. I know when you have things going on and no one seems to know what it is we can become frustrated and want to give up and write the doctors off but what a wonderful gift we have in our kid that make us keep going. Keep strong and it sounds like you are getting a lot of encouragement here so keep up the post. I really think about all of you on here and pray often for you all.

[Jennifer51]

Rough night last night (Sorry, I know that is relative). My right leg seems to be giving me more trouble than the other limbs, and I spent the night wrestling with cramps and that stretched muscle feeling.

I guess what troubles me the most though is the awkward feeling in my face (mostly nose and palate) and jaw. Since the endoscope ruled out any acid reflux damage the shortness of breath, tight chest, and dry couch have a different meaning for me now. Again it is just a waiting game to get to someone with the expertise to diagnose.

I promised my wife I wouldn't discuss anything until I have a diagnosis of something, but the kids are really starting to clue in to something being wrong (My 9 and 7 year olds are sharper than a whip, and just watched my mother die from terminal cancer this spring). Any advice on assuaging kids fears since I really don't know what's going wrong with my body? I don't want to tramatize them uneedlessly, but then again I don't want to blow it off in such a way that if the worst case scenario does come true, I've betrayed their trust.

Robert

I was recently diagnosed with Bulbar Palsy (MND) and have the speach and swallowing problems... and the cramps and tight feeling on the calves, and I also have terrible pain in my hips....I was advised by a friend who is a doctor...to try drinking Tonic Water daily....a good quality one... I started to drink it and despite hating it, it has taken most of my pains away....its worth a try. I was told by another doctor to take medication, which I cannot swallow, then another specialist I saw, told me NOT to take the medication as it had yet more side effects...so the tonic water suits me just fine...it is the quinine in it that reduces the pain...though not apparently for everyone...but it must be worth a try. Jennifer

[awieleba]

I started to drink this after reading the site. It did help I think. I asked my neuro about a prescription for quinanne and she said the same thing. It has alot of side effects, mainly for the heart. She also said that to much can keep you up at night. In medical school they would use it to stay awake?! I was drinking a full bottle at night, guess what i was waking up evey 30 minutes. I drink it during the day mixed with cranberry. Oh, somtimes with a little grey goose--what the heck at this point!:-D

[wright]

April (awielaba) posed two questions that I can answer:


From my reading so far, brisk refexes dont happen with cidp. I hope that someone in the know will read this and answer that?

The deep tendon reflexes with CIDP are diminished.


PN's, I had a ncv for nerves and it was clean. So, again unsure if a clean ncv means no PN.

This depends on which nerves are affected. It is very difficult to test some nerves during the NCS portion of an EMG (most notably, proximal nerves). Therefore, if those nerves are the ones that are abnormal and other nerves that can be tested are normal, the results of the NCS can be normal.

The other thing that you have to keep in mind with an EMG is that there are other conditions that can mimic the findings of ALS. Take for example multifocal motor neuropathy (MMN), which is a type of neuropathy known as a mononeuropathy multiplex. It's a fancy way of saying a neuropathy (damage to a nerve) that affects multiple nerves through-out the body. In the case of MMN, it only affects motor nerves and so the sensory portion of the NCS will be normal but the motor portion of the NCS will most likely be abnormal . . . and the EMG will definitely be abnormal. These same results can definitely be seen with ALS.

The clinical picture is also just as important, so electrophysiological tests are just one piece of the puzzle.

[wright]

Jennifer51

What type of pain are you in? Is it cramping or neuropathic pain or both? I'm curious.

[planningguy]

Thank you for all of the kind words and encouragement. It really helps, especially when as many of us do when trying to get answers, we go full circle and try to convince ourselves that, "There's nothing else it can be." (If you ever find yourself crafting ultimatums like that you should stop for a moment and pick up Dale Carnegie's book on worry. It's a classic, and even though its a little dated, its one of the best available. Plus, because its a classic you can pick up a paperback version for less than the $25-30 that a modern "guru" will try to have you pay).

I did have a moment of frustration when I called the neuro's office and found out that the office asst. was only setting up a consult with a neuro/optimologist for the eyes. I made it clear that I wanted a full neuro eval with case review and emg. My insurance (because the powers that be decided to switch to a regional firm) is just very picky about paying "off network" providers without a solid physician referral. This goes to the extent off not even wanting to pay the off network split unless it is an emergency situation. It makes it a painful slow process, that I'm sure many are familiar with.

As many of you have noted, my family is the most important thing in my life. When I sometimes read stories about how down and out people can be when facing a crisis, I consider myself blessed by my family and friends. My work is very supportive, and people always ask if they can do anything even though my symptoms are more frustrating than life altering. When I finally broke down and told my brother my worst fears on the phone the other day, he just said, "Rob, I've been looking at 10-20 acre parcels out here. If the worst ever happens, we'll just build two houses instead of one, but you're going to be fine."

April, my wife is the most patient woman in the world who can deliver a swift kick in the butt at just the right moment. Sure she worries, but her family is tough as nails pioneer stock that just lives life one day at a time. Their clan is large enough that they have seen just about every crisis imaginable (trust me, there are some doozies there). Family is always there, no questions asked, just help the next person at the right time.

I'm sorry I don't really have much more to offer you, in terms of the other questions. The constant caveat on these forums that none of us can diagnose is so true, and in my experience I'd rather just shrug my shoulders than speculate too much. I'm glad Wright jumped in to clarify the EMG and NCS, because that is something that I know nothing about. I had a nerve conduction study performed in April, that my neuro declared so normal/clean/ideal/inspiring/classy that he opted not to do the EMG.

As far as B12 goes, again I have no clue why it would be abnormally high. It would be a good thing to clarify with your doctor (abnormally high and clinically significant are two different things). Both my GP, and my brother (who is a medical professional), have commented that since excess B12 typically leaves the body through urine, it is not very common to find too much in the system unless you are taking massive supplementary doses on a regular basis. By too much B12, I mean generating clinical symptoms, not an above average value.

Jess, if something tanks at the University of Utah, I will definitely look into your recommendation in Denver. I picked the U because they had a NMD specialty group listed with ASLA, and I have family and friends near Salt Lake.

I've had a number of people mention tonic water, and will have to try it. I remember taking a swig or two as a child in England. I hope it taste's better now :)

Again, thank you for the well wishes, thoughts, and prayers.

Robert

[Jennifer51]

A little of the pain is from cramps, but most of it was.... I dont know how it would be described medically....but my hips were SOOO painfull that it woke me up at night and I could not move without a hell of a lot of effort and pain, the pain just seemed to go right down my legs as well making my legs totally stiff. Meanwhile during the day I am still trying to do lots of bits of mobility excercises. Strange how I can ride a bike in more comfort than I can walk. BUT we know someone who has had ALS for 3 years now, cannot move at all, but he gets lifted on to a static bike once a week and still has a little excercise
I am going to an MND clinic on Friday, my first visit...to one of the oldest and best know hospitals in London. Like most people I keep hoping that they will say something is strange with what is going on, and that they might change my diagnosis...can only keep hoping.
Jennifer51

[Jennifer51]

Jennifer51

What type of pain are you in? Is it cramping or neuropathic pain or both? I'm curious. (sorry not used to forums so have sent this twice...once with the quote and once without...so I guess it now reaches the right person..)

A little of the pain is from cramps, but most of it was.... I dont know how it would be described medically....but my hips were SOOO painfull that it woke me up at night and I could not move without a hell of a lot of effort and pain, the pain just seemed to go right down my legs as well making my legs totally stiff. Meanwhile during the day I am still trying to do lots of bits of mobility excercises. Strange how I can ride a bike in more comfort than I can walk. BUT we know someone who has had ALS for 3 years now, cannot move at all, but he gets lifted on to a static bike once a week and still has a little excercise
I am going to an MND clinic on Friday, my first visit...to one of the oldest and best know hospitals in London. Like most people I keep hoping that they will say something is strange with what is going on, and that they might change my diagnosis...can only keep hoping.
Jennifer51

[planningguy]

Before jumping into something else, Jennifer51, where are you headed in London, St. Mary's? I lived in England as a boy. One of my favorite memories was taking the train to London at Christmas time and exploring the sights (don't think I've had roasted chestnuts since). My brother saw a specialist at Great Ormond Street, but I can't for the life of me remember what for.

I've been trying to avoid just blasting out more, because I know its better to just sit tight and get that clinic consult (come on U of U, don't let me down). Things are just burning my brain, and I had a bad night. I didn't help when my wife went to massage my neck and commented that it felt small and soft, like the cords of muscle weren't there. I am trying to write if off to losing weight, but when I feel it, it feels different (I can easily wrap my half closed palm and fingers across the back of my neck, and I have trouble finding the cords of muscle on either side of the neck).

I really hadn't thought much about my neck, since the PT hadn't commented on it, and I attributed most of the pain and stiffness to being a bureaucrat that spent way to much time in front of the computer. When I was working with the PT one of the reasons why we stopped, was that it didn't relieve the other symptoms. Another reason for me however, was every time we got to the point where we started neck strengthening exercises I felt worse (fatigue, neck stiffness, etc...). The same held true when I tried to do routine neck stretches on my own.

I began getting a sore neck about a year and a half ago, and when visiting my brother in February he commented that my neck had dropped and that I had a stoop (He has treated a number of individuals with degeneration caused by wearing heavy helmets for long periods of time). Again, I have been a lifelong computer user (High school computer geek in the early 90's, two graduate degrees with long hours of writing and research, and now an office job that tethers me to the chair for a good chunk of the day). I just figured the reason that I hadn't felt much pain before was that I was young, and I had finally let bad habits catch up with me.

But now I wonder... I have read Wright mention in another post about thoracic onset ALS, and have heard very little about it. My PT commented that my posture and neck being pushed forward were really bad (worse that the director of my department who was seeing her, and who has had a similar work environment for 20 years longer than me).

I lost another 5 lbs this last two weeks (and gosh darn it it refuses to come out of my face and waist :)) I know I am probably being paranoid, and that consult can't come too quickly. Thanks for listening... it feels good just to type it out.

Robert

[awieleba]

Hi Robert,

just some input on the neck. for the past 10 yrs (since 25) I have has a bad neck. years go by and it was fine, then for months it would be bad. 7 years ago I went to my GP so much for it, he gave me shot of steriod in my neck! (he never did an x ray) My neck has been fine for years. Well it started again at easter, alot pain and I have to use my hand to hold it up, or if i read with my head down it aches. I feel your pain.

Well, during this new process, I had an mri of my c-spine. Low and behold I have slighlty bulding disc's (2 of them) the report stated that this could cause pain or spasms in the neck. So maybe the neck pain is unrelated to this, but maybe not.

When I was going to the reumey and he suspected Anklosing spondylitis ( i tested positve for it, but not every one who tests postive will go on to have that variant).
He did a full back x-ray. He said i have slight scoliosis? I have always had bad posture, and been a massive sloucher! I try every day to straighten it up.

I guess my point is, you can have these problems and it be something else. It made since why my neck hurt after seeing that mri report.

It will be interesting to see if my low spine mri shows anything for my low back pain and leg weakness! I will let you know! I am not counting on it.

April

[fiddleplayer51]

Hello Robert,
I've been reading your posts and am so sorry for all your symptoms and the awful anxiety and sleepless nights that go along with them. I know you are a super dad and hubby and I hate that you have to be so constantly preoccupied by whatever is going on with you.
I just want you to know that I'm so glad you found this forum because I know what an amazing comfort it is to be able to come here and say whatever is on your mind or troubling you, to be able to ask questions and expect varied and wonderful/helpful answers. I'll keep you in my thoughts as you struggle with the medical establishment in your quest for answers.
All the best to you, Robert, and to your family.
Jane

[planningguy]

Jane, thank you for the words of comfort (the same goes to all of the wonderful frequent posters on this site who offer hope, encouragement, and information).

April, thank you for your comments on posture... Momma always did warn me, but I was hoping to get into my 50's before she was right.

By way of quick update, on July 8th my medical records were shipped to the University of Utah Medical Center Neurology Dept. They are reviewing the case to determine which specialists they want me to see first (like many centers, they screen referrals to help manage the caseloads of the specialists), and I should get a call soon. All I know is that a neurological optomologist is somewhere in the mix :)

The nurse at the neuro's office said if I haven't heard from the U of U's scheduler by the end of the week, to call her and she will follow up. When you think about it, staff at a neurologists office must deal with a hefty dose of paranoia, panic, and drama mixed in with the general worry and concern (It's probably a lot less hopping at the podiatrist's office).

Robert

[laurel]

Hi Robert,
I checked in tonight just to see if you had your appt. set up yet. We know what it is like to wait when you are almost paralyzed by fear. My husband initially was told his first appt. at the neuromuscular disease centre was two months from the time they received the referral , but we actually go in within a month as we asked for any cancellations that might come up. Often they know a week or so ahead for some cancellations so that might be something to mention of Uof U gives you one far down the road. You remain in my prayers.
Laurel

[fiddleplayer51]

Robert,
That's great news that your medical records have shipped to U of U. I'll keep my fingers crossed that you get that call from the scheduler by Friday. That's great encouragement too from Laurel that you might get in sooner.
It's so much one day at a time! Waiting is definitely the worst!
Hope you can enjoy the summer AMAP (is that an acronym? It's supposed to mean "as much as possible").
All the best.
Jane

[rose]

Robert, that is great news! And yes, absolutely follow up if you don't hear anything by week's end. When they contact you, if the coordinator doesn't give you any sort of itinerary, or you just know for sure about the opthamologist and a neurologist appointment, then get them to clarify if there are any plans to schedule you for other departments while you are there. Err on the side of being too detailed oriented, if you know what I mean, and, as your screename is planning guy it leads me to think this may be in your nature anyway! As Laurel had mentioned, sometimes the wait can be long, but I've found that once you're into the institution's network, subsequent appointments seem to be easier to schedule.

Speaking from my own experience, it was my rheumatologist that referred me to Hopkins, and he was under the impression that I'd also be seen in neurology, that a series of appointments would be set up. However, the rheumatology clinic coordinator (at Hopkins) could only tell me of my appointment with the rheumatologist and an opthamologist that specialized in dry eye. The opthamologist made sense to me, as they were trying to clarify as to whether I even had Sjogren's much less if it was causing my neurological problems. But, it turned out that these were the only appointments set up, and none of us here were clear about that. It may well be that is the standard protocol for bringing in a patient who's actual medical specialty need is not known, but it was difficult when I'd been pinning my hopes on finally getting some answers ~ and the journey for me, as you know, has been even longer since then.

Anyway, this is wonderful news, very encouraging, make sure you keep us posted :)

[planningguy]

I have my consult date! It's not till September 8, but still I feel like I'm finally moving again towards figuring something out. I am seeing Dr. Singleton who is in their NMD group, and also has EMG and metabolic neuropathy (mainly diabetes related) listed as specialties. It seems like a pretty decent fit, and of course I asked to be on their cancellation list :)

Robert

[rose]

I have my consult date! It's not till September 8, but still I feel like I'm finally moving again towards figuring something out. I am seeing Dr. Singleton who is in their NMD group, and also has EMG and metabolic neuropathy (mainly diabetes related) listed as specialties. It seems like a pretty decent fit, and of course I asked to be on their cancellation list :)

Robert
That's really good news, and is really not that far away, about six weeks...

[laurel]

Glad to hear you have your appointment Robert. Thanks for letting us know and stay in touch.
Laurel

[fiddleplayer51]

Yes, that's great, Robert. Maybe there'll be a cancellation and you'll get in even sooner! Better keep a bag packed and ready just in case. Kind of like being ready to go to the hospital when labor gets going...but not as fun! :???:

Jane

[awieleba]

glad to hear!
the photo of your son is adorable! I wish I knew how to do those!

[planningguy]

Thank you... our middle boy is certainly a cutie. My brother's wife has offered many a time to take him off our hands if we ever got tired of him ;)

For me the easiest way to create avatar photos is to use Adobe Photoshop or Photoshop elements. They both have a "resize image" option that includes measurement in pixels (you should be able to find a similar feature on many photo-editing programs). It helps to crop the image before you resize it. The forum limit is 80x80 pixels or + 70k (though I've found that its really hard to hit the size limit with an 80x80 pixel picture). Just make sure that you don't accidently save over your high-resolution picture.

Robert

[awieleba]

you lost me at avatar and pixels!!! lol!

[rose]

glad to hear!
the photo of your son is adorable! I wish I knew how to do those!

April, I sent you a private message with a link to create free avatars... there is also free downloadable software - trial version - by photgadgetpro, if you want to google it. I use this to resize photos that I want to send in emails. Its very easy to understand. It also will convert photos taken by a camera phone to the same format as photos by a digital camera. A friend suggested it, and I actually went ahead and purchased the full version as it was only around $15, if I remember correctly, but this software does not create avatars.

(Robert, you lost me too, and I have an art background ! just not computer art) And, I agree, your son is a handsome guy :)

[awieleba]

thanks Rose~

I am trying to become more computer savy, since I am on it more these days. Plus, my sister will download her photos and e mail to costco then p/u. She says it is easy. When you have 3 little kids any time saving techinque should be used.

thanks again.

[planningguy]

:-D Sorry... sometimes I just launch in and assume everyone knows what I'm talking about. Bad habit from work.

Robert

[planningguy]

Just a quick update. I haven't fallen off the map. I spent a week at a professional conference then took a little vacation with the family (Thermopolis... hotsprings... wonderful weekend get away in a small town for those of you within striking distance).

I remain pretty optimistic and the more I read the more I understand that there is a lot of investigation that the local dotors haven't done. Worked out the U of U visit with the insurance, and it looks like they will at least pay some. Dad has decided to fly out to spend time with the grandkids. Now its like a surreal wait for a pseudo-Christmas. Here's to finding a bicycle under the tree and not a lump of coal.

I keep reading and hoping the best for all of you.

Robert

[ptich]

After actively seeking diagnosis for a while, I changed my attitude to wait and see (and think of it as little as I can). Not thinking about it seems to improve UMN symptoms. I am pretty certain I have ALS as I can see LMN progression, but it is slow, and that's what I am pinning my hopes on. May be slowing down your quest for diagnosis would help. In any case, I found that even ALS specialists don't have a clue about this disease, and their diagnose it based on same criterias you can easily find online yourself, so why to bother - your guess is as good as theirs.

[brendapals]

hey Robert,

I always heard that finding a lump of coal under the Christmas tree might be a diamond!

You can have the bike- I'll take the diamond! hahahahaha

Keep the faith,
brenda

[rose]

Robert, I was just thinking about you, glad to hear that you've had some nice time away from work. Not too much longer of a wait now. I'm glad your (?) dad is coming out, it should make the whole process a lot smoother for you guys. :)

Pitch, everyone is welcome to their own opinion and methods of coping. However, I do have to go on record that I feel the doctors know much more than I could ever hope to find out online. Maybe if I'd gone through 12-14 years of college studies and training, which is about how long the average neurologist spends learning (before narrowing the field to neuro-muscular) I'd feel differently. I agree that obsessing over symptoms helps no one.

[awieleba]

Robert,

so glad to hear from you! There is nothing better than spending time with your family! IT always helps take my mind off things!

How are you feeling?

april

[planningguy]

Thank you for the well wishes... It reminds me why I enjoy posting here.

April,

To answer your question, some things are about the same. The muscle fatigue and soreness haven't changed much. I think I overdid it at the water park and my biceps and shoulders are still recouping (Hitting the 4-story waterslide everytime the boys asked was worth it, although I did find out that the enthusiasm for the high dive tapers with age :) ).

A handful of things seem to be bothering me a bit more. The swallowing difficulty and tongue awkwardness have me the most nervous, but I have good days and bad days. All in all, I think I have found a rhythm that lets me manage my symptoms and keep on trucking (The fact that my office has a library/anteroom where I can shut the door and catch the occasional cat nap definitely helps).

Robert

PS - I have sworn off using the "twitch" and "fasiculation" words ;)

[CindyM]

I'm with you, Robert. I never worried about twitches to begin with- didn't even notice them until my neuro pointed them out. Even when others notice them under my shirt, I still don't care. I am even getting used to being SOB, although that one is taking a little longer.

:-D I tell everyone that breathing is over-rated!

[planningguy]

Heading to an end o' summer barbeque, but thought I would take a minute to tell everyone some good news.

Just for kicks back when I set up my U of U consult I asked if they would throw me on the cancellation list. I figured the chances were slim because the cancellations would be one or two days in advance, and they would never call me since I was out of state.

Well they called me today to let me know that, it was short notice, but if I wanted it I could take a cancelled appointment for the NMD clinic this Monday! A couple of quick phone calls later, and all the stars aligned.

Babysitter said she would be happy to take the kids early. Wife's work said it was OK (my work is a lot more flexible). All of the medical folks smiled, and said no problem as they printed out reams medical records, burned disks of MRI's, and copied x-ray films on a Friday afternoon a couple of hours before closing time (though I may have been the subject of some "round the coffee pot" swearing). My father even decided to get refundable tickets on a whim, and was able to adjust his flight to spend time with the kids.

It kind of makes me wish I was heading to the Bahamas, but you know life is weird when you positively know you will do a touchdown dance if they find something in the next MRI (I love that conversation: "What do you mean you hope they find something in your MRI? That's awful..."). I'm also steeling myself for the Dr. to say, "Hmm... Let's run a few more tests and have you come back in a couple of months."

I did joke with friend at work who asked what would happen if they did a bunch more tests and didn't find anything to explain my symptoms. I told him that that is when they would give me so much medication that I wouldn't care anymore either. He laughed. He probably won't tonight when his wife gripes about having to burn all of my radiology history onto disk on a Friday afternoon two hours before closing time. I live in a small town.

Fingers crossed. I will let everyone know more as I do.

Robert

[laurel]

That is very good news Robert. Have a safe trip, and I will say a prayer concerning the outcome of your testing. Fingers are all crossed here. I hope the doctors are all easy to talk to and that they are informative as they are doing your testing. Ask questions of everyone i.e. the techs and the support staff. We learned lots by gabbing to the EMG techs, and even the doctor's secretary. It's amazing what will slip out if you get chatty with them.
Laurel

[awieleba]

Robert,

I am so happy that you are on way to getting some answers (we hope). good news and let us know on monday!!!

Have fun at BBQ and have beer for us, or I mean me anyway.

hoping the best for you,

april