Had appointment with Movement Disorder Specialist...Couple Questions please

[Loriliz]

for wright or anyone who might know...

My neuro booked an appointment for me with the MDS before my symptoms had progressed to the point they are at now.

She completed her exam and said that there is nothing wrong with my "brain or central system" but is concerned about my fasciculations, impaired strength and gait and leg and hand atrophy. She said that she would recommend a full EMG work up and is sending me back to Dr. Strong, my neuro.

My question is, for anyone who might know...what else could cause fasciculations, weakness and atrophy?

I am feeling quite lost at the moment. Kind of like a ping pong ball. I feel like just staying away from the doctors until they can find something really indicative to point at and say "tah dah!"

Any feedback would be very welcome.

[crystalkk]

Did you get the full EMG work-up? If so what were the results? What other test have you had done MRI"S bloodwork etc.,?

My guess would be from her clinic exam, (reflexes, finger to nose test, walk on your heels walk on your toes etc.,) nothing was indicating "brain or central nervous system disorder."

[Loriliz]

No, haven't had the EMG yet. Had one done on my face (where I had a really aggravating twitch) about 6 months ago and it was fine and I had an head to toe NCV at the same time that was "within normal" something or other. I have also had an unremarkable MRI (small white matter changes and a small meningioma) and some blood tests.

[wright]

Hello again Loriliz


My question is, for anyone who might know...what else could cause fasciculations, weakness and atrophy?

Peripheral neuropathy can cause fasciculations, weakness and atrophy. There are many, many, many different causes of neuropathy (e.g. vit B12 deficiency, viruses, autoimmune disorders, etc., etc.) and sometimes they're idiopathic (cause unknown). Inflammatory disorders (e.g. CIDP), as well as pinched nerves from compression or slipped discs can also cause all of those symptoms.

A thorough EMG will help with the diagnosis along with bloodwork and a smattering of other tests that I'm sure you will be getting. I wouldn't jump to any conclusions. Let the neuro do the appropriate tests and we'll be here for you in the meantime.

Question for you: are you in any kind of pain . . . and if so . . . what kind of pain?

[Loriliz]

Thanks for your quick reply wright..

I do have some pain, mostly muscular...like the somewhat permanent charlie horse in what is left of my right buttock that hurts during the day and twitches at night. Other cramping does occur in my leg and hands and can be quite painful.

There is also an "uncomfortable" feeling that I want to stretch out but can't.

Sometimes I become quite stiff (mostly my fingers) and have a hard time bending them.

So I gather that ALS is a CNS disorder, so I don't have that? That would be a good thing.

[Loriliz]

I actually had a look at peripheral neuropathies and CMT sounds very much like what is going on now, although symptom onset is a little late (the inverted champagne bottle thing totally describes how my calf looks). I occurs to me that the carpal tunnel release, focal dystonia and fibromyalgia that have been variously diagnosed over the years may have been unrecognized CMT....that would be hugely great news.

[KANSASTOM]

Anyone in your family with similar symptoms. My grandfather and father, both have really bad case of rheumatoid arthritis or that is what all of us thought until four months ago. I was dx with ALS on 4/29/08 which prompted me to start looking at my family members.

[Loriliz]

Hi Tom,

My family history is practically non-existant. My maternal grandmother was adopted from England and I know very little about the paternal side, other than my grandfather and father both had parkinsons.

By the way...by "hugely great", I naturally meant in comparison to having ALS.

[KANSASTOM]

I have been genetically tested for this disease, came back negative. They can only test for maybe about half of the types currently known. CMT can also be sporadic, hands can be affected first then feet. I am still searching for answers too, it looks like time will tell for me.