strange undiagnosable illness - Neuromuscular Diseases Message Board

kael · 08-04-2003, 11:03 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. I also posted this under neuropathy.

Thanks Much,
Kael

Freddd · 08-24-2003, 11:23 AM

Hi Kael,

Some of your symtoms make a good match for a vitamin methylB12 deficiency. I have suffered from this my whole life until recently and have seen it at many stages. Not everybody has the same set of symtoms. There are so many at various stages. Methylcobalamin (methylB12) is the immediately active coenzyynme version of the vitamin. That with other vitamin and mineral cofactors changed my life dramatically in 1 hour.

katastrofic · 09-12-2003, 01:46 PM

Sometimes MRI's don't even show nerve damage. I would request another, since sometimes it can be elusive and pop up suddenly. Your symptoms could be a deficiency like the person before me has said, but it is also similar to MS. That is a very elusive disease.
Good Luck