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asmileaday

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I just feel so lost. My husband had his second nerve conduction study yesterday. The last one was a year ago and was abnormal. Please give me any other DX it could be. Here is the progression of whatever it is he has:

I am writing these in the order that I think they happened. And about how long ago symptom started

Foot Drop rt foot- 18 months (while out running foot just quit working)
Muscle weakness in rt leg - 18 months
Twitches in legs - 16 months
Twitches all over his body - 12 months
Muscle weakness in left leg - 8 months
Slurred words - occasionally when tired - 6-8 months
Muscle twitches in face - 3 months
Muscle twitches in lips about 3 months - none on tongue that he knows of
Trouble swallowing - occasionally - 6 months worse lately
Lower back pain - a few months
Right arm weakness - 3 months
Right arm stabbing pain - 1 month

Left arm seems to be good right now.

The doctors ruled out tumors, MS, and diabetes.

DH is a runner and still exercises but is much slower and is very off balance. He makes a point to tell the doctors that he can still exercise. Also, why are small town doctors so afraid to send you somewhere that specializes?

Truth is my husband doesn't push the issue about going to a specialist because I think he would rather not know. But my teenage children are asking questions and he refuses to say anything to them. He just tells them it is nothing but neuropathy.

Is there anything else we could be overlooking?
 

brooksea

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It doesn't sound like this is going to go away! If you could, you need to convince your husband that a diagnosed is urgently needed. The reason being, if it is ALS your family may want to take the opportunity to do some things before his condition progresses to the point where he is unable to get out and do things for himself. (take a vacation, do something he's always wanted to do, etc...)

Can you change your current doctor? Maybe ask him to refer you to another local doc for a second opinion. The second doc may be more willing to give you a referral to the ALS Clinic. If that doesn't work, I would contact the ALS Association in your area and ask for their help. Just tell them the predicament you have with your current doctor.

Has your husband had an EMG done yet? You said the Nerve Conduction was abnormal - what official diagnosed has the doc given your husband?
 
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asmileaday

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The doctor has told him he has some form of neuropathy. I know the doctor is talking about doing a muscle biopsy. I think there may be one other thing that he hasn't had. I'll check with DH tonight.
 

juliesmile

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You may want to check this with the more senior members here, but I read in here somewhere that Nerve Conductin Studies usually come out normal with ALS, EMG's come out abnormal. Perhaps what he actually had was the EMG. They are two distinctly different tests, my husband had both, and the only result the Dr. talked about was the EMG. I actually don't know how the Nerve Conduction test came out. Otherwise all the symptoms sound like there is cause for concern. Time is of the essence. I would get a hold of your local ALS chapter as well.
Good Luck
 

brooksea

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julie-

You are correct! The Nerve Study will be normal, EMG will not. I remember my husband's sigh of relief when the Neuro told him the Nerve Conduction was normal...I said, "No honey, that is not good." And so the ball bounced.

Good idea about contacting ALSA.

Good luck to all!
 

asmileaday

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We got the tests results from the nerve study yesterday. The Neuro said the nerve study on the legs were normal. He also said that the nerve study on the arm is not normal. His problems started in his legs and has moved to his arms.

The Neuro said he believes my husband has compression neuropathy but he also said he has never seen a case like my husbands.

He has referred him to Duke ALS clinic - not sure of the appointment but we are hoping that they will rule out ALS and there will be some other diagnosed.
 

asmileaday

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We have our appointment. It is scheduled for the end of April.

We are hoping for good news.
 

juliesmile

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I am so glad you are going to be seen by someone who can give you the proper diagnosed. Let's hope for compression neuropathy. The pain is a good sign as usually there is very little pain with ALS.

Best of luck
Julie
 
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