strange undiagnosable illness - Neuropathy Message Board

kael · 08-04-2003, 11:00 AM

Hi - thank you in advance for all replies. About four months ago now, I started having some cramping in my left calf - eventually the sciatic nerve became irritated. I saw a chiro with no relief and progressive weakness in calf and toes. Then started the nerve twitching only in that leg. Over days the nerve twitches "moved" up the left side of my spine all the way to my head and eventually encompassed my whole body. Along with this, I felt so sick in my muscles (like the worst flu ever) that I thought I was dying. Eventually, much of the time the twitches became relentless - and I also had internal buzzing along my spinal cord that affected my internal organs so badly that they caused me dry heaves almost nightly. (My symptoms are almost always more severe at night.) At my worst point, I was not sleeping more than 2 hours at a time because my nerves had gotten so sensitive that when they touched anything static for long enough (like the bed) they began to buzz and twitch wildly - so much of my body must touch the bed to sleep that it overloaded my system and I started to get literal rushes of adrenaline that woke me up. My arms and legs are became progressively weaker and for a few days I had burning under my skin all over my body. For several weeks, I was basically disabled by this. I lost 20 pounds though thankfully my appetite has now returned and the weight loss has stopped.

I have had normal MRI's and Brain scan, normal nerve conduction and muscle tests (but 4 weeks ago)-and normal blood tests ... all except for a positive ANA titer of 1:640 and abnormal thyroid levels (I have been treated for hypothyroid for years) which is now being monitored by an endocronologist. I have seen two rheumatologists and two neurologists and they are baffled because my symptoms don't exactly match any box that they could put me in.

The good news is that I have started sleeping better (though still nowhere near normal) and I'm left with tired and aching muscles (better sometimes, worse others).

The twitching has turned into a general tremor (mostly upper body now) and is only really troublesome when I first wake up either in the night or first thing in the morning. I'm just so weak and get fatigued easily.

Don't know if any of this sounds familiar to anyone, but thought it wouldn't hurt to post here.

Thanks Much,
Kael

Hugs,
Kael

harley · 08-04-2003, 02:20 PM

Check out lyme disease.
I have your symptoms too

avia · 08-04-2003, 05:12 PM

Do you have any neuropathy?

kael · 08-04-2003, 06:37 PM

To answer your question, I'm not really sure. I have no numbness or tingling - but I do have pain in many places (though not severe) but mostly my calves. This pain comes and goes and it's never gotten to the point where I've even gone for the tylenol (though I was tempted once or twice.) My symptoms during this have changed periodically - don't know at what point it has been progressive and what point it has become recovery. I just know that right now I still have all over body tremor (though it would be noticeable to no one besides me) - and my calf muscles feel weak and ache. I am still able to walk alright and climb my stairs though I am out of breath much easier than I used to be - maybe from being inactive for the last 4 months with this stuff. My questions and concerns - other than what this is/was - is are these cramps going to last, will I regain my original strength, will the tremor and twitches stop completely and do I have any permanent nerve damage. Could this still be irritating the nerves and contributing to future nerve damage. I just don't know.

Maybe only time will tell.

Thanks for the question,
Kael

kael · 08-05-2003, 08:54 AM

Now my calfs and ankles are starting to swell just slightly by the end of the day. I know it's been warm where I live, but this is definitely not normal for me.