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Warning. Long post.

I last posted in march. A lot has happened since then. To review. I had onset of fasiculations in January. inititally a few and in legs then increased and generalized all over. Majority stilll in legs. Then I noticed partial foot drop on the left and very mild vague weakness in bilateral hands. I freaked out went to primary care who ordered a boat load of blood tests and MRI of head, c,t,l spine all normal. Following week Neuro appointment with EMG/NCS totally normal. Also added CK which was normal. Thank God at this point. Then the doubts started to creep-the neuro took 1-2 seconds per EMG stick. also no sound. I figured this is clearly BFS/anxiety and worked on getting my mind straight.

2-3 weeks later the weakness in my right hand seemed to be getting worse. Ominously I was getting atrophy in ulnar and radial distribution of hand. I know what your thinking. Im nuts.

I should say at this point that I'm a physician. I know nuts. I also know that some people don't know when they are nuts. So I just assumed i had out of the blue developed a mean case of health anxiety. Meanwhile I had the slow progression of hand and forearm weakness worse on right and neck fatigue, stiffness and soreness-worse on right. I also just started to feel significantly more fatigued in general. No more running- i previously ran 20-40 miles a week and 10-12 mile runs were in no way a big deal for me. My symptoms were slow steady and progressive. There were no bad days. There were no good days. THings just kept getting very slowly worse.

Neuro follow up. She agreed something seemed wrong wants a repeat emg/ncv 8 weeks out from original. Im now scared and depressed but this is all you can do. I continue to live my life as best I can. Tuesday was the f/u. I now have bilateral carpal tunnel and cubital tunnel syndrome. He Spent an hour checking and rechecking NCVs. and the final 1-2 minutes on the emg. Again 8-10 sticks and 1-2 seconds per stick. EMG completely normal he says. Tells me he thinks I have HNPP. In summary thats a rare genetic disease that didnt fit my clinical picture. His partner who saw me after the test had nothing new to add. She did say that in no way should I worry about ALS. OK great. Problem was something felt wrong. They in no way could explain the clinical picture. I finally decided enough is enough. No more sneaking around and not telling people because i was afraid i'd be seen as a crazy MD. I consulted a brilliant neurosurgeon i work with and he got me to see a very smart neurologist who repeated my EMG today and it was different. NCVS showed ulnar neuropathy on right. otherwise only mild abnormalities. EMG of my left anterior tibialis (and the other muscle supplied by the peroneal nerve) showed 3+fibs, 2+positive sharp waves. Also Amplitude and recruitement were abnormal but I dont recall the direction. Full EMG report not available right now. Yes this is the muscle that I first noticed weakness in in early March. My right hand is now significantly atrophied (and all of my physicians agree) but EMG of it was normal. Emg was normal elsewhere. New neurologist does not believe it is ALS but doesnt know what it is. It sounded Like he was leaning towards MMN but he didnt specify. He is referring me to someone he trusts in the community. What is going on?

Sorry for the long post. You guys have a tremendous community here and I am blessed to be able to ask questions or simply vent if nothing else. Thanks.
 
I can only tell u this devil started in me in my dominant hand, went to a neurologist who runs the ALS clinic at Univ. of Virginia. Probable diagnosis in 2009, no visible deennervation/reenervation pattern until 9/11. Went organic, dropped all my land workouts for water aerobics, upped the fat in my diet. Also had concommittal ulnar nerve compression, cervical bi-level fusion, and lumbar fusion to correct worsening spondylolitheses L5-S1. So it has been a roller coaster. It is my firm opionion that this is a tough diagnostic process and get thee to an ALS clinic. The diagnostic criteria,as always , need the right experience to interpret. The good news is that ALS is rare. The bad news is that ALS is rare. Take a deep breath, engage that rational mind that got you through med school. Also realize that is not rare to live over 10 years with this. Good luck. I hope you are not on our team. Feel free to message me if I can help you further.

Hollister
 
correction from above. atrophy in median and ulnar distribution. not radial.

hjlindley thanks for reply. Good advice. My plan is to head to the ALS clinic the next neuro recommends. I guess it's taken this long to convince myself the problem isn't in my head. Defense mechanism I guess.
 
You're only looking at the LMN picture right now. Do you have any UMN signs? How are your reflexes? Babinski? Hoffman? Jaw Jerk? Spasticity? I had pure UMN signs for a long time with related weakness and that made getting a diagnosis complicated. First EMG I ever had was normal except the anterior tibialis with decreased recruitment and increased amplitude. Everything went downhill from there and by the third EMG 8 months later I was a LMN poster child. I'm sure you know too well that you will most likely be having to wait and see. Best of luck to you and hope it's not a MND.
 
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Personally, I'd see an ALS specialist. Wish they'd only left the needles in my harms and legs 1-2 seconds!

Significant atrophy doesn't mean ALS--my arms are wasting away--left is almost 90% useless--but all my other symptoms are UMN--and they have no idea what I have after a year of getting progressively worse.

Hope you can find some answers. Are you sure it's not the cubital/carpal tunnel causing the arm issues? If you can run at all, I would try to relax and let them do their tests to find answers.

You'd tell a patient not to worry over a condition you may not have. Anxiety will make any symptoms worse, too
 
Sarah-Absolutely right about lack of UMN signs. So far none. I am hopeful and praying.

Notme- the 1 second sticks may have been less painful than the complete EMG i had yestreday, but he missed a hell of a finding in my ant tib. What's worse neuro#1 was in a terrible hurry and I knew the test was substandard. As far as running-thats done. I can trot compared to what I used to do but the price I have to pay of not being able to help with the kids bedtime or my wife with dishes is not worth it. I found that I am completely and totally wiped out after a run. I essentially stopped running in late March. I'm finding I have to prioritze with my activities. Work first. Kids and wife second. Excercise/recreation last. Unfortunatley there hasn't been much left for number 3.

As far as anxiety and letting tests take their time- I'm trying but it's been tough. If my hand continues to worsen my ability to work may soon be an issue. I'm 35 with 2 small kids and a wife at home. The possibility of no work creates a whole other level of anxiety. Not really trying to have a pity party just sharing what my concerns are.

Do I have ALS? I don't know. But I do believe I have something. The slow progressive nature, minor loss of function, and constant fatigue/stiffness have been a challenge to deal with. A minor challenge I know if this becomes something worse. There is no doubt I need to find a neuromuscular specialist. I will. That's the next step. For now I'm thankful I have you guys to share with and hear ideas from. It can get to be a bit much on the wife as she is the only one I'm really sharing all this with at this point.

Thanks again
Steve
 
Steve, a lot of what you're going through is the same for me, without the fasciculations but adding lack of reflexes in a few locations. The hands and one of my legs have clinical weakness. I also have frank atrophy on the hands in the thenar eminence and FDI. It's been progressive over the last seven-ish months. No diagnosis, but hey, the only reason a diagnosis is needed is if it leads to specific treatments. I'm already under the active care of a Rheumatologist for another condition and am seeing a Neuromuscular specialist to work out what might be happening. But I'm trying not to push the process. Give it time, understand it better, and let the doctors drive the agenda.

I understand the bit about exercise as well. While my hands are never good at this stage, any form of exertion or effort will exacerbate them to the point that the simplest tasks become untenable.

Good luck to you and I'm happy to exchange notes and experiences with you given the similarity of what we are dealing with.
 
HI Steve

I can relate, believe me. I had to give up my business late last year--I couldn't teach my CNA classes because I can't use my hands--it was a hands-on business.

My point is that stress is a killer. Contact the ALS association and find a list of their recommended doctors. If you were here, I'd suggest the doctor I saw in Tampa.

Your post shows that not every0one is equal in any profession--even medicine. Fatigue and lack of energy are very common in so many conditions, though. Again--symptoms I can relate to.

After your complete EMG yesterday--was ALS on the doctors radar? Did he give any indication that it was a possibility? Unfortunately, ALS doesn't discriminate--we lost a physician with ALS on this site last year.

That said--you're your own worst patient. You know enough to scare yourself. I wonder why you didn't tell the first physician you were a doctor and question the EMG technique.

Also, EMGs can change over even a short period of time. Your symptoms--the atrophy--but until the carpal/cubital tunnel issues are addressed, that is going to stop the doctor from looking further. Too darn often ONE issue is found and other things are left ignored.

Obviously atrophy that your neuro noticed isn't in your head. But--the list of possible causes is just long. You know the signs of carpal tunnel and cubital tunnel. Are you experiencing them? The pain, numbness and tingling? Is it at all possible there is a neck issue in the cervical spine?

We have a saying around here that it can only be ALS when it can't be anything else. Have you had your GP do a general work-up on your blood? The obvious things like CK, potassium, B-12 etc.

If you're worried about being accused of an anxious MD label--see a physician outside of your community--but tell them you're a physician, too. You're much more likely to hear impressions that way. For me, I wanted to know what they THOUGHT was going on with me.

I pray you do find answers--anything other than ALS.

What did the neuro say regarding the results of the EMG you had yesterday? Were they consistent with nerve death or were they more signaling some other pathology?
 
I posted something many hours ago that is still in moderation. There are a few aspects of this that I can relate to.
 
I posted an interesting link for you as well... hopefully it will show up some day... poor moderators are swamped!
 
Thanks everyone. Appreciate the support.

The neuro said he doesn't think it's ALS but he doesn't know what it is. Leaning mmn I'm concerned about that diagnosed because ateophy has shown up and this is so far a 4-5 month illness. well see.

He as well as all the physicians I've seen know that I'm a doc. It's my coworkers friends and family I have been shielding from my problems. Until now. My only focus at this point is getting an answer.

Good point on celiac. Im diligent about the diet but that is a blood test I can add. You never know.
 
So, one neuro found mild carpal/cubital tunnel and they are saying that's what caused the atrophy? Or is it that they are mild enough to not be the cause?

My issues started in the dominant arm--and it was months before the obvious atrophy.

Did they do an MRI of your neck to rule out issues there?

Your post above is a bit confusing. Are they saying MMN? Or are you considering it as a possibility?
 
Sorry about confusing post.

Neuro #1 said bilateral carpal and cubical tunnel. Presumptive diagnosed of hereditary neuropathy with pressure palsies. That did not explain the clinical picture so I sought a second opinion.

He found acute and chronic denervation/Reinnervation of left tibialis anterior as well as right ulnar neuropathy and left ulnar slowing. Peroneal nerve was normal. He said he does not believe it is Als primarily because the atrophied right hand is not lighting up on emg. The multiple peripheral neuropathys are also not consistent. He is concerned however. He mentioned inflatory causes ,repeating my neck MRI ,doing a lumbar puncture, and ultimately trying ivig. He never mentioned mmn or cidp. I was just reading between the lines. He is sending me to someone else next week. Well see. My concern at this point is that the emg is simply lagging. The leg is showing up now and the arm may show up in time. I guess only time will tell.
 
My neuro did a blood test for hereditary pressure point neuropathy. Rare as all get out. Negative for me (only one lab can run the test and results took 3 weeks). I have weakness and atrophy for 18 months before the EMG showed re=enervation. I had a probable diagnosis in 2009 and final in 2011. Dealing the entire time with the Director of the ALS clinic. This is a frustrating diagnostic process for everyone. Hopefully we will have a bio-marker soon.
 
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