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christyloo

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Learn about ALS
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Birchwood
My husband is 41 and in good health other than his arms. He fell at work a few months ago and after his arm bothered him for a few months finally saw an orthopedic. The doctor was horrified when he saw my husbands hands and arms. The muscles are severely atrophied on both sides. We hadn't noticed because he recently lost 100 lbs after gastric bypass so just thought his smaller arms and loss of strength were a result of weight loss.

His EMG showed nerve damage in both arms and he is in surgery now for the first arm to release the three places the nerves are blocked. The orthopedic is very worried that a disease is behind this and wants us to see a neurologist after the second surgery. He says this is the most unusual case he's ever seen.

My question is - does this sound like what any of you have experienced with ALS? Should we go to a neurologist who specializes in this type of thing or should we wait and see what our local neuro sees? We are about 2 1/2 hrs from Vanderbilt where there is an ALS clinic.

Thanks for any input.

Christy
 
Sorry - I've reposted this in correct forum catagory but can't delete my original post.
 
ALS does not show up on an EMG. I think you can likely look elsewhere for a cause of the atrophy.
 
I certainly hope it is NOT ALS, but I thought EMG was one of the tests they use to confirm diagnosis?

http://www.med.unc.edu/medicine/web/12.12.07 Honeycutt.ppt


'ALS: Diagnosis
•ALS is primarily a clinical diagnosis, sensory and motor nerve conduction studies and electromyography (EMG) are a standard part of the evaluation of motor neuron disease.
•EMG findings in ALS combine features of acute and chronic denervation.
•Sensory and motor NCS are most often normal in ALS.'

I'm just trying to get accurate info by posting here, it seems there is a lot of conflicting info out there.
 
EMG is the test for ALS. I think the above post is incorrect. OP you mentioned his test showed nerve conduction blocks. I think those are actually detected on the pre EMG portion of the test called an NCV. Perhaps that is what the other poster meant. ALS does not show up on NCV per say. I think given the atrophy and the "rare" presentation according to your Orthopedic doctor I would opt for The Vanderbilt ALS Center. Best to you and your DH.
 
An EMG is the primary test that determines ALS.
ALS causes weakness and atrohpy. My left hand started with weakness and atrohpy.
 
Wrong form...
 
I'm terribly sorry I don't have an answer to your questions, but I will say a prayer for your husband. I sincerely hope it turns out to be nothing.
 
Yes I'm sorry. I was unable to delete after I realized there was a better place for this question.
 
Thanks everyone for your advice. We are just very uncertain of anything right now.
 
You cannot jump to an ALS conclusion from this!

The orthopedic is very worried that a disease is behind this and wants us to see a neurologist.

Christy read the sticky's and you'll also see many posts that will inform you that many treatable diseases might be the culprit. Not sure an ortho is qualified in the El Escorial criteria for ALS. The ortho found nerve damage and he had major weight loss. period

The neuro will probably order the normal long gamble of tests then after MRI's etc consider the possibility of ALS.

My advise is to rest easy, think positive and not jump to the conclusion that your husband has an incurable degenerative disease. Starting with your local neuro is perfectly ok. If he diagnose your hubby with ALS then he will probably refer you to the clinic.

Good luck, keep in mind the power of positive thinking!
 
I certainly hope it is NOT ALS, but I thought EMG was one of the tests they use to confirm diagnosis?.
A thousand apologies. I was thinking of MRI not EMG. Yes, an EMG is a standard diagnostic tool for ALS.
 
You cannot jump to an ALS conclusion from this!


My advise is to rest easy, think positive and not jump to the conclusion that your husband has an incurable degenerative disease. Starting with your local neuro is perfectly ok. If he diagnose your hubby with ALS then he will probably refer you to the clinic.

Good luck, keep in mind the power of positive thinking!



Thank you for these kind words. I DO believe there is great power in positive thinking.

I guess my fear is we don't get a good doctor that will figure out what is going on. I have worked for doctors my entire life and am aware at how many mistakes can be made so my first instinct is to be on guard and be proactive. I've worked for some jerks who could really care less if they give someone a correct diagnosis, but I do believe there are good ones out there.

I just want to make sure I arm myself with all the information, but in no way don't want to 'go for' a diagnosis like ALS. My husband is a very active man and I don't know how he would be able to deal with a diagnosis like that, so I'm hoping and praying we don't have to deal with that.

I am praying for all of you that deal with this on a daily basis, whether it be as a patient or a caregiver.

God bless!

Christy
 
Vanderbilt is the place to go. They have good neurologists and an als clinic so they know the tests. Sometimes it take a while to determine. Hopefully they will find something else going on rather than als.
 
I would hold off on surgery until you have done the Vandy consult. Conduction blocks could suggest multifocal motor neuropathy (MMN) though significant atrophy is less common. But the gastric bypass brings up some other possibilities as well.
 
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