Unknown DX

Hi,

Although you received a clean “emg”, your symptoms concern me a great deal. If you haven’t already received a second opinion, I would suggest you do so.

I had/have quite a few of the symptoms you described, especially with coordination and weakness.

What you’re experiencing may or may not be CIDP or GBS, but it has to be caused by something and should be diagnosed as quickly as possible. The earlier you receive treatment for whatever ailment, the better the outcome (usually).

Take care,

Tina

If I may ask, other than the EMG, did they perform other tests? Have you seen an internist? Was your blood work normal? Did you have a NVC (nerve conduction velocity test)? Not sure if a lumbar puncture would be extreme as there was no clear diagnosis from the EMG.

I’m sorry to ask so many questions. 😮 Just a few things to ponder until those more knowledgeable have a chance to read your post.

Take care 🙂

Hi ktmj, Welcome to The Family! If I were you I would get a second or third opinion. If its noticeable to you, thats all that matters. Insist on a lp, most but not all, cidp people have an elevated protein, just remember there are cidp people who do not have elevated levels also. How long have you had these issues?

ktmj,
One thing that comes to mind is Myastenia Gravis which is also autoimmune. On another forum it was discussed extensively, and many people who have it complain of muscle weakness especially following exercise, but the weakness improves with rest. Few have had the droopy eyelids which is classical, but some do have swallowing issues on odd feelings in their tongues. Here is one site that discusses MG [url]http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm#124023153[/url] Of course non of us can self diagnose but it might be something to ask your doctor about as it seems MG is being seen more and more these days.
Laurel

Hi,
My mom opinion about the atrophy, I would safeley say that atrophy would only set in with cidp if the nerve damage was extensive and you were wheelchair bound or had little excersize which does seem to fit your activity level being that you are able to do the elyptical. About the MG, there is a particular nerve in the finger or hand (can’t remember) that they test when doing the ncv/emg to r/o MG. Is there pain? I would say that when my 11 y/o has extensive activity, wild man play as I call it, he will pay for it as you say and have pain, usually in the areas that were hit the hardest, in his case his ankles.
Why do you say an ALS scare 6 years ago, what was the reasoning that it was possible ALS? As suggested, a spinal would be a good place to start to check for elevated protein (as mentioned not all have an elevation) additionally, I probably WOULD get another ncv/emg (before deductable time again) and go to someone who has experience with gbs/cidp. Bring the old report with so that the doc can test the same nerves for a comparison as well as ones that may have been missed (MG test) I assume MS has been considered as well as Lupus? Any mri’s to check for lessions(MS) or ANA blood tests for Lupus? Good luck, let us know.
Dawn Kevies mom

From our experience atrophy is consistent with CIDP. My husband has an atrophied/wasted right hand and he has CIDP MADSAM. He has bouts of foot drop in the right foot too. He has no visable thenar muscle in the right hand and about 60% use of the hand since getting IVIG for the past year. He has extensive axonal damage. Even though he had wasting and inability to hold utensils and a coffee cup he continued to try to trim our horses feet with that hand–very pitiful to watch. But good on him to keep trying, and he still trims all five horses alternating the bum hand with the good–and I am his able assistance holding the feet stable for him while he trims. We had the ALS scare too–one differential dx was ALS. He remains a diagnostic enigma according to his neuro as she says he has a extremely rare variant. No anti mag, slightly elevated CSF, no sensory symptoms.
Laurel

[QUOTE=ktmj]Hi folks, I’m new and have a few questions.

First, my symptoms. I have subjective weakness just about everywhere. I can still do most normal activities, but definitely weaker and I pay for it later with spasms and mild cramps, neither that are really painful but annoying.

I also have visible (to me) atrophy, basically muscle mass change in most limbs. I have also become less coordinated.

And one thing that stumps me (and scares me) is that there is quite a bit of facial and head tightness with occasional spasms that are not visible, but I definitely feel them.

I have had no severe sensory issues other than fleeting burning in one hand and occasionally mild burning in my feet.

This has been going on for a few months, maybe 6, and progressing. I’m an active 42 year old.

p.s. I have been a benign twitcher for 20 years until all this.

The docs just send me away right now. I had a “clean” EMG in October and pass all clinical exams.

Does this appear to be at all a CIDP path? I am hoping it is not something even more sinister – I know some of you folks have had it tough. I appreciate input and your generosity.[/QUOTE]

Hi,

This could be almost about anything. Do check out your total blood picture.

I found out that for me it had to do with the autoimmune thyroid disorder Hashimoto’s. See this link for total list of neuro symptoms regarding thyroid disorders:

[url]http://neuromuscular.wustl.edu/msys/mend.htm[/url]

Never give up searching for an answer!

K, How are your potassium levels? If you can do the e machine for 30 mins consecutively then it isn’t likely to be mg-repetition is painful and gets progressively worse the longer you do it. I have atrophy in my legs and my right arm as compared to the otherside, but I still try to perform daily tasks as best I can. A neuromuscular dr would be a good place to get another opinion. Take care.