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laurel

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Hello Everyone,
I have just joined your forum, and I am seeking some advice. My 59 yr. old husband was seen by a neurologist 2 years ago and was diagnosed via EMG and MRI to have two impingements in his right arm. He was referred to a surgeon. In 2005 he had surgery of his rt. arm in two places to free the impingements. He has lost more use of the arm since the surgery and now the muscles in his arm are atrophying and his arm is visably shrunken and he is losing use of his hand more day by day.

We decided to seek a second opinion from another surgeon in May of this year. He reviewed my husband's MRI and surgical report and said he feels that my husband never had symptoms of carpal tunnel and that he needed to return to original neurologist.

We did this and it was a frustrating experience. The neurologist seemed offended that the surgeon had queried his original diagnosis of carpal tunnel and a second impingement below the elbow. I asked about the possibility of it being a motor neuron disease. He was very sarcastic and said, "what are you worried about Lou Gehrig's Disease? Have you been looking on the internet?" I said that I had because I was puzzled with my husband's shrinking arm and increasing loss of use of it.

He ordered 3 MRI's--brain, cervical spine, and brachial area of the shoulder. We returned for the results a few days ago. He said the MRI's were negative for any tumours or impingements. He said he doesn't have a clue what is wrong with my husband, but all he can think of is a rare neuromuscular disease. He has now put in a referral to another neurologist who is a specialist in neuromuscular diseases. He says he doesn't "think" it is ALS because my husband has symptoms of atrophy in only one arm and that other things would have surfaced by now in other parts of his body.

Can anyone offer any imput, advice, recommendations please.
 

brooksea

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Laurel,

I'm sorry you have to deal with such an insensitive neuro!

Where are you located? You need to get your husband to an ALS clinic! ASAP!

I'm not saying your husband could have ALS, but you need to rule it out.

I have to go now, but I'm sure other s will comment in the AM.
 

Frizzel

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Your husband's diagnosis

(He has now put in a referral to another neurologist who is a specialist in neuromuscular diseases.)

This is good news that at least you and your husband are not being brushed off. It sounds like your doctor is taking what is happening seriously.

Let us know how your appointments go if you'd like. All the best in getting to the bottom of what's going on.
 

Lorie

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Laurel

If this Doctor don't have a Clue what is wrong with your husband. Don't take him back there. I agree, get him to an ALS Clinic. Everyone with ALS has their own Journey! I hope he does not have it. I get very frustrated with some of these Neuro's. Do what you have to do for your husband! Keep us posted.

Lorie
 

laurel

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Thanks to all of you who have replied. I am been worrying and it's nice to get some support. I will indeed keep you posted.
Laurel
 

duplinwino

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Laurel, my husband has MND. His started strictly in his right arm, actually his hand first and progressed over 6 months to involve his entire arm up to his shoulder. He can barely use that arm now, only for minimal support and balance of items. He only had very mild weakness in his right ankle at that point. So, not to worry you, but there are cases where it starts out very asymmetrically or even only in one limb. Everyone's course is different. I hope you have better results (and a better doctor) with the neuromuscular visit. Please keep us updated.

Ashley
 

laurel

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Hi Ashley,
When you say your husband has MND, does that mean he has ALS or one of the many different types of motor neuron diseases? We still don't have our next appt. as the motor neuron neurologist is away on holidays. What type of testing did your husband have? Did they ever query nerve impingements with him in the beginning? My husband has had MRI's and two EMG's from the surly neurologist, and he was totally uninformative about the results. We could kick ourselves that we didn't ask for copies of all the testing results.
How is your husband coping?
Laurel
 

duplinwino

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I sent a private message to you Laurel.
 

laurel

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I just sent you a private reply Ashley. Thanks for your kindness.
 

CindyM

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Hi Laurel-welcome to the fourm. As you can see, this is a great spot for information and support. Your husband's arm sounds suspiciously like mine, and the fact that I had an ulner nerve transplant back in 04 caused the ALS clinic to reserve judgement. I now have symptoms in my other limbs but not much atrophy so we are in a holding pattern. My right arm, though, is becoming useless. Just wanted you to know that trapped nerves can cause a bunch of symptoms. It is best to get things checked out but I did want to offer this ray of hope. Cindy
 

laurel

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Hi Cindy,
Thanks for the welcome. Wouldn't it be great if he has an entrapped nerve! My fingers are crossed. Take good care, and I hope that things stay in a holding pattern concerning your symptoms.
Laurel
 
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