Status
Not open for further replies.

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
City
Sheridan
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
 
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.
 
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.
 
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
 
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
 
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
 
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
 
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?
 
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
 
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 :(
 
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
 
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
 
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
 
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?
 
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
 
Status
Not open for further replies.
Back
Top