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MikeJ

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Learn about ALS
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Parker
Hi,

This is my second post. I have been waiting for word back on my emg test done a by a neuro muscular neurologist. I have MS and my MS Dr. sent me to have a neuromuscular evaluation by this other neurologist. Well she did not do the evaluation, just the emg/ncv tests. My MS neurologist called me and was telling me it looked like ulnar never entrapment on my right elbow or maybe a c4/c5 disc problem. I told him the emg was bad in the section of my hand that has atrophy in it. My MS Dr. found the atrophy in my hand. Well he must have found that section in the report and said he was confused by what the other Dr. wrote and would have to talk to her about it. That was last Thur. and I have not heard back from him.

I now have a copy of the report. In the area of the emg for my hand atrophy it shows: Insertion Activity - Increased, Fibs - 1+, PSW - 1+. Fasciculations - 1+, Polyph - Increased, MUPS AMP - increased, MUPS Dur - Normal, Config - Poly, Pattern - Normal, Recruit - Decreased

Type written notes: evidence of acute and chronic denervation

The 1+ indications are positive for the number of muscle groups involved.

The emg Dr. mentions just the NCV test results in her summary and blames the hand problems on ulnar nerve entrapment. She does not mention the emg results at all unless I am reading it wrong?

Well I have weakness in my hand and legs. I cannot pull the tab off a bottle horseradish sauce with my right hand for example. I have been falling and stumbling now for over a year now. Lifting my left leg higher then 12" is not possible anymore.

I did some searching on these results along with spasticity, weakness and atrophy. The results were amazing. Numerous published studies of MS patients latter developing ALS with a good percent of them have some type of family gene associated with ALS.

Does anyone have any advice on questions to ask my MS neurologist when he calls me back? I am thinking about asking him to refer me to the neuromuscular clinic at Colorado University teaching hospital. They have an ALS clinic there to.

Everybody just assumes my MS is the cause of all this, I was happy to get the emg test done. I would just like to find out what all of this new stuff is about so I can make the appropriate plans going forward.

Thanks,

Mike
 
Did your doc get back with you yet? Can your back prob be fixed?
 
Yes he did, he talked with the other doctor and said ulnar never entrapment in the elbow and some type of neuropathy for the lower legs. He is referring me over to the neuromuscular clinic at the University of Colorado for a second opinion.

I have called three times to set up an appointment with them and so far they have not called back yet? Its very frustrating when people never call back. I will be pretty close to the hospital on Wed. and I think I will stop by and see what they have to say about not calling back etc.

Hope you doing well!

Mike
 
Hi mike
Sometimes it can take up to 10 days to set up an appointment with the university hosp. Because they have to Waite for the referral from your insurance.
 
Hi Patrick,

Well that is good to know. I never could get anyone to answer on the phone. I am not real sure my doctor sent in the referral?

I take it you must have been a patient there? How was your experience with them?

Thanks for the reply,

Mike
 
I now have an appointment at the neuromuscular univeristy clinic on the Oct. 15 for another opinion.

Changing subjects: I found a good sized lump on my neck a couple weeks ago, the ENT Dr. said it was a lymph node and come back on Oct. 24 to check it again. Probably going to have to get a biopsy on it. I found some more in the armpit area on the other side. Wonder what he is going to say about these new ones?

Mike
 
They won't schedule there without the referral and your records faxed up. The doctors there are good, but the office gal there isn't good at returning calls if it's the same one from a couple years back. I would call your referring doctor and make sure they have sent up the needed information from their end.
 
Hi Brian,

I did do what you suggested and checked with my Dr. He confirmed the referral. I left 4 messages to make an appointment. No return phone calls on the first 3 and last message was finally returned. I am not sure when my Dr. actually made the referral.

Well at least its scheduled now.

Thanks,

Mike
 
I meet with Dr. Liewluck and a few of his friends today at the CU Neuromuscular Clinic. The good news is he says his clinical examination is not consistent with Neuromuscular problems. He also said my previous EMG is not consistent with todays examination.

He wants to repeat the EMG himself in a couple of weeks.

I found another really big lump on my clavicle a couple days go. It was big enough to see, don't know why I never noticed it before? Saw it brushing my teeth. Will have to see what the ENT doc says about it on 10/24. The other lump is still there, so probably a biopsy for sure, I would guess both now.

Mike
 
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