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kelleyri

Member
Joined
Aug 25, 2011
Messages
22
Reason
PALS
Diagnosis
09/2011
Country
US
State
MA
City
Watertown
Hello -

I am new to this board ... and I am nervous.

I am a 46 year old male and I have made two visits to the neurologist -- first time was just pushing/pulling, etc. The second time I had an EMG and a cervical spine MRI. I expect a verdict -- or at least a narrowing of the range of possibilities -- within a few days. I'm awaiting a call.

The doctor has told me/hinted that it's a moto-neuron disease. Just what ... we'll see.

It started with wrist pain ... my primary care doctor referred me to a wrist doctor/surgeon. He found it was not "his area" and he referred me to the neurologist.

In fact, it's my left arm (from shoulder to hand) that's weak .... there is muscle atrophy. My fingers get stiff (as well as weak). The neurologist -- with the manual inspection -- also though he detected a slight weakness in my left leg (vs. the right leg).

Otherwise, I feel fine. I work out regularly (cardio, not weights). I have no problem eating, swallowing or breathing.

So, can anyone tell me if this sounds like ALS ... or what other diagnogis I might get?

Any help would be welcome and appreciated ... I am very nervous.

Thank you.
 
I should add that I do get some muscle twitching in this same (left) arm.

Also, I believe the doctor was going to call if the MRI revealed a pinched nerve, so I don't believe that is the answer/verdict.

Thanks again.
 
Kelley did the neurologist give you any info. after the EMG? My husband had similar symptoms and after a third opinion was diagnosed with a treatable condition called CIDP-MADSAM. He has an atrophied rt. hand, rt. forearm, and drop foot of the rt. leg. Still has the atrophy, weakness etc. but monthly IVIG halts progression. Good luck and let us know, and ask any questions that come to mind.
Laurel
 
Thanks, Laurel ... no I didn't get any immediate feedback on the EMG (which is the second one I had; the first one, performed by a different neurologist, showed nothing of note except muscle weakness).

I will keep what you said in mind ... your input is much, much appreciated.

All the best.
 
Did they do an MRI of your brain? Could be CVA same side weakness. A pinched nerve in cevical spine would only affect UE not LE .
 
sya15 -- can you explain your abbreviations? CVA, etc.

I apologize for my ignorance. Your info will be helpful when I next visit my neurologist.

Another question for anyone: Regardless of what I'm told (for a diagnosis), should I seek a second opinion?
 
Kelley, CVA is cerebral vascular accident (stroke). Yes indeed always get a second opinion! My husband saw a general neurologist for several years with complaints of loss of strength and grip in his rt. hand, hand cramps, twtiching etc. That neuro. basically said everything was fine even after repeated EMG and nerve conduction testing. We felt he knew best so didn't seek a second opinion. Eventually the neuro. said he had two nerve impingements and referred him for surgery. He had the surgery and got progressively worse to the point that he couldn't use a knife or fork or turn a key. Had to retire early as an airline pilot because he couldn't safely use the toggle switches etc. Hubby paid for a private opinion and that specialist said "progressive muscle atrophy". Then the first neuro. saw him again and speculated ALS. Then we got a referral to a neuromuscular disorder neurologist who within six weeks diagnosed him with CIDP. We could kick ourselves for not seeking a second opinion after the first visit with the "dopey" neurologist--as hubby knew things were not right regardless of what the neuro. said. The whole saga took about 3 years or more and by that time hubby had a shrunken forearm, loss of muscle in the thenar plane and drop foot. None of those things are reversible. Along the way we learned there are lots of conditions that can have symptoms similar to ALS so you need a very good diagnostician. A good doctor will not object to a second opinion.
Laurel
PS Also, all four limbs should be tested. Hubby's first doctor just tested the rt. arm. Subsequent testing at the neuromuscular disease clinic was done on all four limbs which show abnormalities in all four limbs.
 
I'm sorry CVA is a stroke. Shes right it could be CIPD. You should ask about that. Do you experience any numbness or tingling in either arm or leg?
 
oh UE means upper extremity your shld/arm/hand etc. and LE lower extremity. You could have pinched nerve in cervical spine that will present in shld/arm depending what level. However leg symptoms would be pinched nerve in lumbar spine.
 
Hey thats funny I just noticed that you are from MA. I'm originally from Ma Longmeadow (next to Springfield) Is Watertown near Boston?
 
Hey Kelley, a fellow MA resident here. Where are you being seen?

As far as your case goes, I wouldn't jump to any conclusions. See what the test results say and how your doctor interprets them, and then go from there.
 
Yes Kelley, don't jump to conclusions just yet. Often the EMG esp. in a fast case like yours isn't the end all but a stepping stone towards diagnosis. After I got one of mine the dr. said 'I have no idea what you have'...that is fun to hear... :)
There are a lot of other diseases that are CURABLE that can be detected from having an EMG and NCV. Also a lot can be ruled out from this test if it was clean and other tests can then be done to try and narrow it down.

The biggest advice I could give you is to make sure the dr. keeps working towards a diagnosis. Don't settle for "I don't know, or lets just wait and see for a year..." I did that one...yeah now I am in a much worse place than I was and finally I am getting respect that this is a true disease I am going through. Always go for that second opinion I say...good luck to you!
 
UPDATE: Today I received the diagnosis I didn't want ... my doctor told me ALS (or a similar disease). He made this assessment after reviewing my EMG, an cervical-spine MRI (no sign of pinched nerve) and a blood test.

Is this enough to make this diagnosis? Or what else should/could be done?

I am schedule -- as he encouraged -- to get a second opinion. That appointment is tomorrow morning at a downtown Boston hospital.

Any advice would be much appreciated. I'm scared right now.

Thank you.

Also, in addition to what I described above (to begin this thread), I believe I know feel some weakness/discomfort in my left leg. Could this be confirmation of his diagnosis?
 
UPDATE: Today I received the diagnosis I didn't want ... my doctor told me ALS (or a similar disease). He made this assessment after reviewing my EMG, an cervical-spine MRI (no sign of pinched nerve) and a blood test.

Is this enough to make this diagnosis? Or what else should/could be done?

I am schedule -- as he encouraged -- to get a second opinion. That appointment is tomorrow morning at a downtown Boston hospital.

Any advice would be much appreciated. I'm scared right now.

Thank you.

Also, in addition to what I described above (to begin this thread), I believe I know feel some weakness/discomfort in my left leg. Could this be confirmation of his diagnosis?

Aww dude that sucks. Get a second opinion. are you tripping and stumbling around everywhere? can you stand on one leg(Left one)?

Lets hope the results were wrong.
 
I'm so sorry Kelley. I remember that day so well in my case. Horrible thoughts and feelings all over the place. Can you get a perscription from your doctor for some Xanax or something like that? It helps tremendously. I take a little nibble from one every night so I can sleep through the night. 1 pill lasts me 4 days so it's not a lot. Do you have a good support system? Family? You shouldn't be alone right now.
 
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