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ZenArcher

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Hello everyone, new member and first time poster. I am currently undergoing testing for possible MND and have some questions for those of you with more experience and knowledge. I've done my research and don't believe that ALS is my problem but I will let the people who make the big bucks make that decision for now. I first noticed some weakness / lack of coordination in my left hand in Oct of 2005. At that time I would have a friend crack my back and an hour later I'd be up and running again with no problems. Since that time the left hand has gotten weaker now showing some atrophy mostly in the thumb muscles and forearm. I haven't experienced fasiculations but I have had occasional muscle twitching. Blood test showed a slightly elevated CPK and initial visit to the neurologist showed slightly exaggerated reflexes. Completed a brain and cervical MRI this week and the EMG/NCV is scheduled for the 23rd of March.

Now for my questions:
Does MND/ALS always present with fasiculations or can they come later?
Has anyone ever heard of Carpal Tunnel or pinched nerves causing atrophy?
What other conditions can present as above? I'm not asking for a diagnosis just information. Let's just say patience is a virtue and apparently I'm not very virtuous :)
 

CindyM

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My Doc says a trapped ulnar nerve will cause atrophy in the thumb and hand. I had my right ulnar nerve transplanted almost 3 years ago so that could explain what is going on in my right hand. Not everywhere else, though.
 

Meg1

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ZenArcher said:
Now for my questions:
Does MND/ALS always present with fasiculations or can they come later?
Has anyone ever heard of Carpal Tunnel or pinched nerves causing atrophy?
What other conditions can present as above? I'm not asking for a diagnosis just information. Let's just say patience is a virtue and apparently I'm not very virtuous :)
Your questions, in order:

1. Fasciculations are usually a fairly early sign of ALS but they can also follow weakness and atrophy. FWIW, I don't know how you are distinguishing "fasciculations" and "muscle twitching." To me they are the same thing.

2. Carpal tunnel and pinched nerves can lead to disuse of your hand/arms and your muscles can therefore atrophy to some extent but the two conditions themselves don't cause atrophy.

3. Other conditions--multifocal motor neuropathy (in MMN reflexes are usually depressed rather than exaggerated), myasthenia gravis (usually, but not always, muscles above the neck are affected first), post-polio syndrome (if you're under 50 this is unlikely), various (usually hereditary) myopathies and some other extremely rare things that may be difficult to diagnose.
 

Mark

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hand symptoms

Hi:

There are some similarities between your presentation and mine. I notice you did not mention pain. Pain has not been a significant part of my condition either. I started with shoulder weakness 11/04 and some odd hand symptoms with weakness which at the time occurred only when exposed to cold and cleared after 20 minutes in a warm environment. What did your neck MRI show? My condition progressed slowly initially but in the last six months rather rapidly so that now I have atrophy and weakness shoulders arms hands and neck. Hopefully, you have something different but I am giving you some background about me to explain my diagnosis which may or may not apply to you. I have seen four specialists in neuromuscular disease with almost as many different diagnoses although three out of four mentioned the possibility of progressive muscular atrophy which is the more general category of what is affecting me, namely bibrachial amyotrophy.

Others may have already mentioned this but it requires a good deal of patience in order to come to a diagnosis in this field. There also appears to be a lot of fluidity among diagnoses.

I hope this helps some and I don't mean to discourage you -- and also helps me to ventilate!


Mark
 

ZenArcher

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Meg: My understanding of fasciculations was that they were muscle twitches but at a fairly consistent interval / rate, meaning that they were fairly constant. If I'm wrong please correct me. Sorry I forgot to mention I'm 39.

Mark: I had the same issues with cold. I don't have the results from the MRI yet I just got it taken on Thursday this week. I haven't had any real issues with pain. Of late I've been having lower cervical upper thoracic pain but I don't know it is related. I'm not at all discouraged.

I appreciate all the information.
 

ltr

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You are right about the difference between fasciculations and muscle twitching. The neuro told me fasciculations are unrelenting, constant, can always be seen. Twitching can be occasional or in intervals. Anybody can have muscle twitching and it is not necessarily indicative of a serious illness. There are many, many, many syndromes and diseases that have these symptoms. I wish you the best. Leslie
 

Meg1

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ltr

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And I thought I was supposed to believe the neuro. Imagine that!
 

Meg1

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ltr said:
And I thought I was supposed to believe the neuro. Imagine that!
Wow! That's some neuro you've got there. Two days ago he was a "freak show" and today he knows more than the National Institutes of Health. I can't wait 'til Tuesday--he'll probably be raising the dead.
 

ltr

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I'm on your side, but you thought I should believe him. I was saying that I couldn't believe he made me feel as if the fascic's were meaningless. I read your links and couldn't believe I saw a professional. I do still think he is a freak show, you helped prove it. The only thing I can come up with is that maybe he is trying to get me not to worry while he does the testing? I guess that could be a good thing as long as he doesn't treat me cruddy.
 

Meg1

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ltr said:
I'm on your side, but you thought I should believe him.
No, I said to believe him if he is an ALS expert. But you said he isn't one. I am always very specific in my recommendation that anyone who suspects she has ALS should be seen at an ALS Center and that she is wasting her time seeing a general neurologist.

ltr said:
I was saying that I couldn't believe he made me feel as if the fascic's were meaningless. I read your links and couldn't believe I saw a professional. I do still think he is a freak show, you helped prove it. The only thing I can come up with is that maybe he is trying to get me not to worry while he does the testing? I guess that could be a good thing as long as he doesn't treat me cruddy.
IMO, most neurologists are rather socially inept. It's a specialty that sees a lot of very sick people and neurologists have to deliver a lot of really bad news. It's just not the sort of thing that interests the socially well-adjusted (of course there are exceptions). I don't know what the guy you saw is trying to do but chances are it has less to do with you than it does with him. Sounds like you're getting what you need from him (the EMG) and if there's bad news he can refer you. But I really don't think you have ALS.
 

ltr

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I wanted to go right to the als clinic, but they wouldn't make the appt. without going to neuro first. I really hope it is something else, but either way I would like to get to the bottom of it so that I can increase my quality of life at least enough to make it through a day. If the EMG is clean I am hoping he will check other avenues. There are so many, but lyme is one that is a possibility. I dunno. I would really like to take something for energy, but without increasing all the twitching!

ZenArcher - you're right about patience being a virtue. With symptoms like the people on this forum have, it becomes a must have! I'm trying to learn some patience with diagnosis myself.
 

Jamiet

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You need to evaluate Kennedy's disesase......it's very possible, esp. with slow moving...and an elevated CPK! And it's not terminal

Good Luck....
 

hopingforthebest

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Hello,

My husband started last year with bilateral muscle wasting in his shoulders, numbness in his arms and weakness in arms and neck. His local neurologist has diagnosed him with MMN (Multifocal Motor Neuropathy with Conduction Block). This is a treatable diagnosed.
He has been receiving IGG Infusions for past few months with no improvement. Has gotten the itchy body rash but wants to go for another round next month to try to get some improvement. We went for second opinion to ALS clinic in Phila and the head specialist said the MMN is very rare and with his expertise, has only seen about 5 cases. He told us my husband could possibly have a cousin to ALS which is PMA.

We, of course, are hoping for the treatable MMN.

Will pray that you get some answers and that they be good ones!

Patty:)
 

ZenArcher

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Well at this point, I've been diagnosed with MND but I don't know the flavor yet. Based on the EMG the doc mentioned MMN and has referred me to Hershey for a second opinion. I've got an appointment scheduled with them on 4/12 so we'll see what happens next. Anyone here been to Hershey ALS clinic?
 
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