[NewsToMe]

Hi all:

I've been working on trying to get a diagnosis for about a year. It started around ten months ago with a botox shot and then a viral infection and then just some weird stuff that kept on happening. I had double vision, my eyes went blurry, and I kept getting exhausted right around 3 PM every day. But I could live with all that and didn't think much of it until this symptom started I guess around February. I started shaking when I was sitting up and I thought it was Lhermittes sign ( sure feels like it) and then I thought I had ALS.

So...many months later, three MRI's and an emg later, the neurologist did an EMG and a test for antibodies.

The EMG was abnormal showing radiculopathy in my right leg but nerve conduction and repetitive stimulation was normal. She did a manual sfemg she thought was "mildly positive" so she set me up to get another more formal one but as far as I'm concerned I've got MG.

Anti-achr antibodies were positive ( she said "borderline) at 25, and the other three were negative.

"Muscular weakness" isn't really the thing that bothers me though. I suppose I do have it and I've been nearly bedridden for months now with exhaustion but what's really getting me is these nerve sensations I'm having. Shaking and trembling, first of all, what will happen is kind of as if the nerves at the back of my neck, my shoulders and sometimes my legs and back are really irritated. It feels like they're sort of jangling after I make any movement at all when I am lying down, and sometimes it feels like my whole body is vibrating.

Movement often has a kind of "aftershock"-- say I lift my arm and then lower it again -- there is this jangling sensation, like my muscles are not syncing up with the nerve impulses or they are annoyed at being called into service.

I wish I could describe it better but it is *so* troubling. I think if I didn't have this symptom I wouldn't be even bothering going to see any doctors. I would think I was just really worn out or something.

The only thing that helps is to lie down, flat on my back, and be as still as possible. This comes and goes throughout the day but is never gone for more than a few hours. When I sit up it will feel like I am having really fine -- *very* fine, tremors, and sometimes they are visible to the point that my neuro at first thought I had thyrotoxicosis.

This is really the most debilitating part of all my symptoms. I can handle everything else going on so far but all the nerve sensations are driving me crazy. I would do anything to make it stop but I am wondering if treatment for MG is going to really help .

Does any of this sound familiar to anyone here?

[Snowman3]

Originally Posted by NewsToMe

Does any of this sound familiar to anyone here?

Yes, it sounds familiar, but with some variation. After prolonged very high dose shots or sublingual (without swallowing for 1/2 hour or so) methylcobalamin and adenosylcobalamin, the tremors and odd nerve sensations became intermittent until the doses were lowered, then it crept up again. Yes, laying flat and still and waiting it out is the only short-term way I know of to relieve it without the help of a doctor whenever it comes up again, and for long-term without the help of a doctor is raising the OTC b12 doses. Also, when it gets to be intermittent, keep a watchful eye on any factors that may trigger a worsening - drug reactions, exertion, etc. You are fortunate that your doctors are taking you seriously so soon and actually doing test after test until they find what's wrong instead of brushing you off to psych. I hope you find that the MG treatments help these symptoms better and faster than the above methods.

Just an aside, but I've heard that 'electric shock' sensations are seen in MS, but it sounds like you're in good hands so your Neuro will pick up what's happening over time and has already been on top of MRI's. Diagnoses are harder with atypical things and things in early stages, but it's great you're getting tested early, so you're likely to get treatment to slow, stop, or reverse symptom progression.