In Limbo

[screwedagain]

Greetings,

I've been putting off posting on here, because it seems to make what may be going on with me more "real." But here it goes. Some of this information may be irrelevant, but I thought I would throw it in just in case someone out there is more clever than I am. Don't worry, I get to my ALS questions at the end...

I am 29 years old, male, and was in relatively good health (other than the fact that I smoke like a chimney, especially lately). In June 2007 I had surgery on my lower back (a L5-S1 microdiscectomy) following an injury in March 2007 (shovelling snow). The postoperative pain was horrible, but slowly got better, and I was walking around better than I was before the operation. About 2 weeks after my surgery (the first week of July), I noticed that the fingers on my right hand were swollen. I didn't think too much about it, but then I started getting some serious pain in my neck and right shoulder. Thinking I might have just "pinched a nerve" or whatever, I went to my GP who ordered some X-rays, which were normal. In the meantime, the pain got so bad that I returned to the GP, who ordered a Nerve Conduction Test and c-spine MRI. The NCT, of my arms only, was normal, and once the insurance company decided to pay for the MRI, I had that, and it was normal.

So my GP decided to do some blood work. B12, iron, liver function, kidney function, thyroid function, something for arthritis...all normal. At my request my GP did a lyme titer and, of course, it was negative. He then ordered a CT scan of my head, neck, and chest - normal. By the last week in July, I noticed that my right hand was getting a little weak (in addition to the neck pain and hand swelling). He then decided to refer me to a neurologist - after 3 that couldn't see me until October, and one that refused to see me, saying that I was my orthopedic surgeon's problem - I finally got an appointment. In the meantime, around mid-August, I noticed that I started having almost constant fasciculations in my calf muscles, feet, and thighs. I occasionally get one in my abdomen, arm, and neck, as well. I also started getting the sensation that I have a constant lump in my throat, and gag a little bit usually after I eat (especially while smoking). No trouble swallowing, yet, but the gagging seems to be more frequent after eating.
So I waited and waited, and finally there was a cancellation and I got to see a neurologist last week (September 5). He examined me (looked me over), asked a bunch of questions, and when I told him about the fascics in my legs and weakness in my hands (actually, my fingers) he said that I might have a MND. He said he would do an EMG on all of my limbs (that same day). He also said that he would arrange for an MRI of my brain.

During the EMG, he noticed some fasciculations (a tiny pop maybe every 10-15 seconds) in my legs - calves, thighs. I'm not sure what else he noticed, but he said that my results were "abnormal" and that I had a MND (he would not say which one), and was referring me to the neurology department/MND specialists at the medical center here in Syracuse for further evaluation. I've never seen a doctor so certain about anything. He also said that based on the EMG results that I didn't need to go for the MRI (I did anyway - waiting for the results, which I am sure will be normal). He also took some blood to test for autoimmune things - naturally, I haven't heard back on that yet, either.

So here I am, and all I know is that I "have a MND" and I am waiting for whoever to call me from this medical center to tell me which one. The twitches in my legs are pretty frequent (one somewhere in my legs every 10 seconds or so), my legs are stiff, I'm having trouble with stairs now (my knees feel weak), my fingers are stiff and my grip is weak, and I have this stinking lump in my throat. Like everyone else probably has done at some point I've been scaring the hell out of myself looking up ALS on the internet. I've also bought an enormous life insurance policy, and I'm freaking out.

Nobody seems to think that the surgery could have caused this. The neurologist didn't even consider my neck/shoulder pain and hand swelling, which is what started this whole thing in the first place - could this be MND (or ALS) related? I've noticed that my legs are considerably worse (weaker, twitchier, if that's a word) over the last week. Could an EMG cause this? Or is this just whatever I have getting worse? Does the neurologist know that I have something bad, and he just passed me on to a MND specialist because he didn't want to tell me?

I was fine in June (other than the back pain from the herniated disk). Now I have these symptoms, and I've been told that I have a MND and I'm slowly convincing myself that it's ALS. I've also decided that I really, really, really don't like doctors.

I'm 29, about to finish my graduate degree in 3 months, and was planning on getting a job, starting my life, buying a house - now I don't know if I'm going to be able to do this, and it is weighing heavily on my mind. I'm even considering taking a leave of absence from school, because I can't concentrate, I can't stand to be around people having a normal life, and I'm at wit's end. I can't even enjoy some good old-fashioned denial, because I'm reminded of everything every 10 seconds when one of my muscles twitch.

Sorry for the length of this message - I've never been accused of excessive brevity. Thanks in advance for any insight you may be able to provide.

[Al]

Hi there. Welcome. First off there are no doctors here but some people fairly knowledgable about MND's. I'd think myself for the rapid way your symptoms came on and the way you have all these things going on at once that you don't have ALS. The one doctor's comment about it being your Ortho's problem leads me to think he thinks he screwed your back surgery. Try getting him to repeat THAT in court though. I'd be going back to the Ortho, sounds like his problem and you read up about the other stuff and convinced yourself it is an MND. As you may have noticed from other peoples posts, there are EMG's and then there are EMG's. Some are only as good as the operator. I've had bad operators. I'm not discounting your pain or symptoms but I'd be asking the Ortho what went wrong.
AL.

[Sandy Loam]

Your tone is frustrated and scared to say the very least. I feel your pain.....literally.

You need to trust that there are people that will be reassuring to you on this forum. They will help you get through this.

Only one week ago, I was lost and I mean lost.

This forum has changed my life. That sounds silly does it not, but I'm happy to prove it.

You are making serious progress and if you stick around, these folks will help you and reassure you of the many other possibilities besides ALS/ MND.

Try reading lots of the threads and you will soon realize that anything is possible. JamieT has one going with a Canadian Mike that opened my eyes. There is every indication that while there are many experts, there are simply far too many unanswered questions.

The field of MND reminds me of Computers in the 70's. Remember the Commodore Computers? Whoa, now there is a scary thought since you were not yet born.

Nobody has a good handle on these medical conditions / issues. The flood gates could open at any time. I think it was Annmarie that told her Neurologist that this forum probably has more information than he has access to.

I'm going to keep the faith and thank God for leading to these folks. Just try it for a few days, but keep an open mind.

Out
Sandy

[guwainengle]

Hi Sandy,

Didn't your initial symptoms start out with twitching in random areas?

g

[ltr]

Screwedagain - I'm really sorry for all that is happening to you and hope we can give you some sort of peace while you are trying to work this out.

Let me start by telling you that many of us have had bad EMG's in one way or another. Like Al said, bad operators. If you went to see a regular neuro, well, many times they don't know squat about MND.....or myopathy......or MS.....you get my drift! A specialist is the only one that is going to be able to tell you what is going on. The fact that your neuro said you didn't need the brain MRI proves, to me, that he isn't all that educated on MND's, seeing as it is a diagnosis of elimination. How can he eliminate everything before he's checked?

I went for a year and a half feeling weak, cramping, twitching, exhaustion before I had a muscle biopsy showing polymyositis. There are days I felt the weakness coming on stronger and stronger and I have to tell you that being scared, anxiety, depression definitely make the physical symptoms of any neuromuscular disease much worse. That doc gave you every reason to have some anxiety. What most of us like to recommend right off the bat, is to get something to help you relax while you are going through this. It will help a lot. The twitching is definitely a reminder of a death sentence (that many of us don't have) and anxiety makes you twitch much worse.

I would also like to tell you that after I had my EMG my legs were much, much weaker for about 10 days. I called the neuro who said that this does happen sometimes.

Lastly, please don't quit school for now, try to keep the norm. My illness struck while I was finishing up college and I persisted, which I am now thankful for. It was really hard to do.

Oh, and I live by you, Elmira. Please tell me who you are going to see...is it Upstate Medical Center? The doc I had from there was a nightmare and I would like to prevent you from going through that! He was dead wrong with his dx (or lack of one....remember the belly grabber guys??!). His name was Dr. Vertino and a fellow whose name I will have to look up. Make sure you get into the MDA/ALS Clinic. But, for now, don't think the worst. We are here for you. Leslie

[Jamiet]

Ok Sandy, i had a commordore 64.......i'm 32....your making me feel old now....lol... I hope you are doing better, it sounds like it. when is your wife leaving?

Screwed again...YOUR NOT SCREWED.......... I have a saying in my bass boat..it does about 70 miles per hour and it says, "Get in, Sit Down, Shut up and Hold on"..... MND or if you "think" you have MND, you will have to do the same...except for the shut up part.....More like you have to "speak up". Be your own doctor, don't let the doctors steer you, you steer the doctors. Do NOT dx yourself, it will only add to the anxiety.

The best advice we can give you is call your nearest MDA Certified ALS clinic, tell the receptionist your problems, they will get you in soon. Tell them you will fax the medical records and get a release from the ALS clinic and send it to your neuro so he can get yoru records to them right away. If it is like he said, they will get you in quickly, if not, you call them and demand to be seen soon, trust me, they will get you in.

Finally, your 29 ok.... ALS is rare....REALLY rare. You know, it's 10 x's as rare in 29 year olds. If you were above 30, then...maybe, but still rare. It is impossible, NO, i have a friend, dx at 27. Anything is possible.

One thing, it's probably not ALS, it came on really quickly ok! REally quickly. So, lets sum this up....ALS is very rare at 29, ALS rarely presents really fast and all at once. So, i've just gotten you into the rarest of rare categories. Let's hope your not a statistic, we're all rooting for you ok.

Finally, call your doc, get you some meds to cope. Wellbutrin did the trick for me. You will have to find the right one for you, i tried 4 before i got the right one. I tried 1) Lexapro - made me more emotional; 2) Paxil - Could'n't get outta bed next day; 3) Effexor - Felt like i was in outer space next day and finally, the Wellbutrin...i didn't feel anything, which is supposed to be. The right one for you will make you feel nothing, then in about two weeks, you will notice you are able to cope better.

In the middle of this two week period, tranxene ext. release 11mg did the trick for calming me down.

Screwed...again, your not screwed. I'm 32, got two kids, I have been where you are and are actually there. It's scary to say the least. Don't give up on your education, that's your drive OK, that's what will keep you going ok!!!

Also, i was going to die back in November 2006, so much to the point, i drove to the Houston ALS clinic without an appt. and demanded to see the ALS specalist.....Well,. i got in that very same day..... I'm not saying try this, but if you go there and are persistent, you may get lucky. Oh yeh, and by the way....i'm still here.

Hang in there, there is a million other things it can be ok and local neuros know diddly squat ok...no disrespect to them, but they are limited in knowledge.

And you gotta quit smoking, wellbutrin is approved to help you quit. You have to quit cold turkey, i did it 3 years ago......i quit smoking and have felt like crap since then...lol... Ok, i know what it's like, smoke all you want right now.

We are here for you, hang in there.

rgds,

Jamie

[Pythia]

Dear Leslie,

Who would you recommend if not Upstate Medical? They are the only ALS clinic listed on the ALS Association website in this area (I am in Ithaca)? Have you found someone that you like and trust?

[ltr]

I have had much better treatment and luck with dx at Strong Neuromuscular Clinic. That's not too far from you and it is an MDA/ALS Clinic. Dr. Stanton was very compassionate and went the extra step to help diagnose me instead of blowing me off! But, I did only see Dr. Vertino and his stupid fellow at Upstate Medical, maybe the others are better. He jumped around the room holding his roll of belly fat saying that we all change and he doesn't get uptight about it! Oh My Gosh it was a nightmare. They said they would call me to come back and have an EMG with nerve conduction, sleep study and blood work. Not only did they NEVER call, I called 3 times to schedule. I finally went to Strong, had an EMG, full work-up and muscle biopsy and to this day have not heard from Upstate to schedule my tests. It has been about 4 months. Not exactly people you can trust! But, that doesn't mean it will be the same for you, maybe the other docs are better.

[screwedagain]

First of all - thanks for the very, very, very quick replies. Obviously you all care a great deal, and I appreciate that. I expected that I would pop on every couple of days and *maybe* there would be something...wow.

Second - I remember Commodore computers. I actually had one of it's competitors - the Tandy Color Computer (CoCo). I also recall the lovely TRS-80...yikes...

Third - I know in my case, with my age, and sudden appearance of symptoms, that I would definitely be in the "rare" category. Well, my fear ties into my nickname - I am probably one of the few people that was affected by both 9/11 (lost a job) AND Hurricane Katrina (I moved to New Orleans in 2002, and returned in September 2005 right after the storm). So in terms of rare things happening to me...well, my luck to date has been, shall we say, bad.

Lastly, I'm not sure who they are referring me to at Upstate (it is Upstate). All I know is that I'm waiting for someone to call - I looked her name up on the internet, and apparently she is the research coordinator. It is rather disconcerting that Upstate is running a clinical trial on a new ALS drug...why would I be referred to the research coordinator?!?! Geez.

Thanks again for your replies...the twitching continues, as well as the gagging...we'll see...

[screwedagain]

annemarie - They said they would be calling in 1-2 weeks (that was a week ago). I may call this person tomorrow just to see what the hell is going on. I think Jamiet is right, I need to take control of these people. Either that or I need to just start running down anyone in a white coat with my car.

And I know what you mean - about people saying that "these things dont happen." It's funny, when I was reading about the frequency of ALS, and I saw that it affects 1 out of every 100,000 (or some other really high number), the first thing I thought, given my history, was "yeah, that could be me."

Oh - I forgot to mention - I've already been on zoloft since 1998. I've tried the others, which either (a) give me horrible nightmares, (b) make me a complete moron, or (c) give me screaming headaches. I do have some librium, which I originally got because I'm terrified to get on an airplane. I've been taking that, because when I'm stressed, I don't want to eat. At least it makes it a little easier to eat something.

[jimercat]

Well screwedagain I hope you do not have ALS. You must have gotten your karma from the same batch as my husband, "Mr. Whatevercangowrongwillgowrong!"

Yes, it wouldn't hurt one bit to contact the center and be proactive and get on the road to diagnosis. At least then you would know what you are dealing with and can plan for the future.

Don't quit school if at all possible, not with such a short period of time left.

Hang in there and keep us informed please.

[Jamiet]

Hey Screwed,

First, we need your name or some nickname besides screwed....lol....because if we keep addressing screwed, i think alot of people here will think the message is for them...lol.... Ok..i'm trying to make you guys laugh, i suck at jokes.

I'm from Lafayette, about 1 1/2 hrs drive from New Orleans. It's ashame what Katrina did, you don't really know until you've seen it with your own eyes, news does no justice. It's the weirdest thing i've ever driven thru. it was like a ghost town on these old wild western movies, where the tumble weeds are blowing thru with nobody there, dark and QUIET. I'll never forget that as long as i live.

Hang in there and yes, get on the doctors. If they do an EMG, make sure they do yoru tongue, paraspinals, and the muscles where problems are. Don't let them finish until you are satisfied, we all, including myself, get in there, let them do inadequate EMG's and freeze up and don't speak up, so don't forget. Write your questions down now.

We all have some sort of rarity, so we know how you feel, it's not fun. We are here for you, hang in there. Get that graduate degree, because you probably have something treatable and will get to use that degree in the near future.

hang in there.

rgds,

Jamie

[screwedagain]

Well I called the person at Upstate today, and she called back, after an hour or so. Apparently I'm being referred to the director of the ALS clinic (I do not recall the name - Shevner or something like that). Unfortunately it doesn't look like they will be able to see me until sometime in October. I asked how much I should read into the fact that I'm being referred to an ALS clinic...naturally she was hesitant to answer....so how much should I read into that?

Jamie, I've been to Lafayette a bunch of times. I used to work for a nonprofit advocacy organization, and we had a program there. The director of the Lafayette program was a total golf nut, and I played at the Farm a couple times. She also used to take me to this restaraunt (Don's, I think it was called) that pretty much wrapped everything in bacon and deep-fried it...

Jeff

[screwedagain]

I already tried replying to this, but it doesn't appear to have worked. If it pops up again, my apologies - I'm too much of a Luddite to understand this Internet stuff...

Anyway, I called Upstate this morning and just heard back. Apparently I'm being referred to the director of the ALS clinic (Shefner I think his name is). My appointment is October 3. I asked the woman how much I should read into the fact that I'm being referred to an ALS clinic - naturally, she was evasive and said that my neuro "must have seen something that he wants a consultation on." As far as I know, the only thing he saw was fascics in my legs - unless there was something else he didn't feel like mentioning to me. So how much should I read into this?

Jamie, I've been to Lafayette a bunch of times. I used to direct a nonprofit advocacy association, and we had a member program there. The director of the Lafayette program was a big-time golfer, and I played at the Farm quite a few times. She also used to take me to this restaurant (Don's, I think it was called) that pretty much wrapped everything in bacon and deep-fried it...yummy...

Best,
Jeff

[jimercat]

Jeff,

I would read that the neuro is trying to eliminate ALS as a dx. So he/she is referring you to the ALS Clinic where they are specialists.

Are you sure you cannot think of symptoms that may have occurred before your surgery?

Keep us informed!

[Jamiet]

Don't make too much of it, i was referred to the director of the houston ALS clinic, then to the co-director. Supposedly, they say with 110% certainty i don't have ALS.

Great, so what's got me so screwed up..

Don's is the name, several others also. I live a hop-skip and a jump (few miles as the crow flies) from the Farm.. Interesting.

Were you back after Katrina, do you think that had anything to do with your issues. Mine popped up right after Katrina and i did work in NO by the NASA facility right after Katrina.

[Pythia]

Strong is not listed as an ALS clinic or center on the alsa.org web site but they have a wonderful reputation.

I want to start researching the current research on ALS; does anyone know of a good place to start?

Thanks,
Pythia

[ltr]

Pythia - Strong is an MDA certified ALS Clinic . That is what to look for. Like CJ said on another post, the MDA provides funds and such to the MDA/ALS Clinics. Not sure why it is not listed there, I didn't look. But, the MDA referred me there and they are listed on their own site as MDA. There MDA Clinic is every Wednesday. Dr. Hermann is the Director of the MDA Clinic at Strong. Here is the link....

http://stronghealth.com/services/neurology/clinicalservices/mdaclinic.cfm

[screwedagain]

I can't recall anything happening before surgery, other than about 2 weeks before the operation I started having pain in my right leg (all of the pain from my back injury was down my left leg up to that point). I told my ortho, and he said that sometimes swelling can jump to the other side and irritate the nerve root there, too.

Immediately after surgery (6/21) and the post-op pain, for about 2 weeks I had very little pain, no twitching, no gagging. Then my shoulder pain and hand swelling started, then in mid August I started getting weakness in my right hand and the twitching started in my legs.

The other day I was playing with my nieces (I have 3 - 6 yrs and 15 month old twins), and the next day I was in excruciating pain - my forearms were really tired, and it felt like someone was stabbing me in my bicep just above the elbow.

Oh - just got a call from my neuro's office, too - my blood tests (for autoimmune disorders) were normal. I asked them to have the doctor call me so I can ask him if he saw something in the EMG other than the fascics.

Jamie - I was back only briefly after Katrina. I evacuated that Sunday to San Antonio (which took about 18 hours), spent a week in a hotel with my two cats, and then drove home to NY. In the meantime, I wound up getting a job offer here, so in mid-September I drove back down to get the rest of my stuff and haven't been back since...

[screwedagain]

Well, I just talked to my neuro, Dr. Evasive. I got him to admit that there was "evidence of denervation" on the EMG - I'm not sure if that's the same thing as there being fasciculations, or if there was something else (abnormal waves or whatever). He did say that it was suspicious for ALS, but that he wasn't sure, blah, blah, blah...

Also had a follow-up visit with my ortho. On the good-yet-possibly-useless-and-a-bit-ironic news front, my back is healing nicely. Yeah, great. I asked if there was any way that my surgery could have caused twitching - naturally, no, it could really only cause muscle spasms in the L5-S1 corridor, but not in both legs like I am having, blah, blah, blah....

[guwainengle]

Hi Screwedagain--

I was thinking of you when I read the US News and World Report magazine for the Best rated Hospitals-- Believe it or not-- The Mayo in Rochester MY is rated #1 in Neurology.. I did not even know Mayo have a facility there. You may want to check this one out-- I am not good with geography or spelling but I think this is Upstate and close you. Mayo is known to be one of the best and the magazine rated alot of different aspects. Hope this helps you on your search for diagnosis.

G

[ltr]

G - nice try!!!! That Mayo is Rochester, Minnesota. I'm not good at geography either! Actually, my clinic is in Rochester, NY and I would be sooo happy if there was a Mayo there as well. But, it was a nice thought. :-D

[guwainengle]

Sorry-- thought there was only 1 Rochester.

G

[Al]

Well if the President is bad at geography , how do you regular folks expect to be? LOL
Al.

[Peg B]

Hi Screwedagain,

You are so young and I am so sorry you have to go through this. But you are obviously strong and bright and have been through a lot. I would like to stress a couple of points. @1 FINISH THAT DEGREE. I hope you are registered for this semester. You will have it under your belt and the time is going to pass anyway. It will be better to have the Masters than not. I met a man two weeks before he and his wife died in a car accident, visiting his mother on spring vacation. I knew something was wrong with his hand when I shook it but had no idea he had ALS for over 30 years. He got DX when he was working on his PhD and told his advisor - "I have to finish my PhD fast." and he did and had a wonderful career as a school administrator. Please let us know about your decision regardig school.

#2. I was first told I had ALS/NMD for certain by a neuro (Oct 31,2006). He sent me, right away, to University of Michigan ALS clinic. (Dec 2006) They said it may be something different and I get treatment/testing for MMN (multfocal motor neuropathy). We still don't know for sure. I remember thinking: Is it good or bad news to be "accepted" to be seen by U of M. But it is better to know as much as possible.

#3 You have gotten good advise about not worrying. It doesn't help or change anything so get the meds that can help with that.

Please know that the thoughts and prayers of the people here are with you. Most Sincerely, Peg

[screwedagain]

Peg - you had to wait 3 months to get to the ALS clinic?!?!?!? Holy crap - I'm coming apart at the seams having to wait 3 weeks!!! You must have a will of steel.

What are the diagnostic criteria for MMN? Did you have an abnormal EMG, etc.? As far as I know MMN is an autoimmune thing, but so far my blood tests aren't showing that's the case. I've also read that MMN typically results in a lack of reflexes, but mine are heightened...

I'm not sure about finishing the degree, yet. I'm so distracted and unfocused that I can't seem to do the work to my satisfaction. I'm considering taking a leave of absence for the semester...I could always go back in the spring. I haven't made a decision yet, though.

[Pythia]

FINISH YOUR DEGREE! I dropped out of grad school for what seemed like insurmountable odds; now it is one of my biggest regrets.

...just my 2 cents

[Peg B]

Hi Screwedagain, (Jeff?)

MMN and AlS in many ways, are the same. My blood work shows no "autoamune" and I have one borderline conduction block. (clear DX of MMN calls for two conduction blocks.) MMN has treatment for the symtoms (IVIG) but no cure and the underlying disease progresses on. As far as ALS I have no upper motor neuron symptoms at this time. One internet site said that sometimes "the upper neuron ...(issues) don't show up until autopsy." (that gave me pause):neutral: I had abnormal EMG in three limbs. I am currently DX with either "Atypical ALS" or MMN. I am grateful it looks more like MMN as I am not any worse and I now can move my baby finger - atrophy right hand. Whatever I have is very slow so the best I can do is do the best I can do. My only fear is to live 10, 20 or less years worrying instead of living. That would embarass me a lot.:)

Also we told our kids 25 and 28 right away (24 hours). We believe in "the best news is no news" so our kids and sibs can trust that everything in OK unless we tell them different. That way none of us have to worry.

And about that paper... Salem Mass. is an excellent theme I always thought. Best luck on getting that done!

Best Wishes, Peg