Good news and Even better news

[birdnerd]

I had a visit with my neurologist today.

I don't have any neurological or muscular diseases causing the twitches and tremors.

The tremors and myoclonus (muscle twitches) are ...

* Not seizures unless they're originating in the hippocampus (a deep area of the brain a standard EEG can't read).
* Not entirely dietary related (except alcohol, caffeine, and sugar).
* Not the result of a chronic neurological infection.
* Not the result of a degenerative muscular or nerve disease.
* Not the result of narcolepsy or other sleep disorders.
* Still a complete mystery. We know more of what's not it than what is.

All blood work is normal. Brain scans of all sorts, visual and electrical, are stone cold normal both waking and sleeping.

She suggested that if I'm really just dying to find out why these twitches and tremors occur, I could go check myself in at the Mayo clinic in Arizona or Minnesota. Maybe they can find it. Maybe they can't.

The most likely reason is that the threshold level -- the baseline level my nerves hang out at -- is lower than the normal person's. So, some stimuli -- like flashing lights, fatigue, crowded rooms, boredom (y'know, the kind you get sitting in a staff meeting or training session), medications, overexertion, blood sugar levels and stuff of that ilk -- cause the nerves to fire off when they normally wouldn't. Why is that threshold level lower than average? Same reason I'm 5'4" and farsighted. Just born that way.

In any case, there's nothing to be done about it. Rearranging my diet past elimination of caffeine, alcohol, and sugar has done nothing to control the phenomena. I can't take the medications, and I've done about all the behavior modification I can manage.

So ... the more or less official diagnosis is: essential tremor and essential myoclonus, which means I get the jitters and twitches for no definable reason.

At this point, I've dealt with it for the last 20 years, so now I just continue to deal with it.

And...

The headache that started in October and didn't let up until June when it turned intermittent is now mostly gone, and even when it's there, it's not a tenth of what it was last winter and spring. Seems the final culprit is food intolerances. I've mutated my diet again. For a while I felt like I was down to rocks, twigs, and high impact plastic, but I've relearned how to cook interesting food within the new tighter guidelines, and I'm feeling much better now as far as the headache goes.

Whoot! ;D

(:
Birdnerd

[Grace Bridges]

Great news! glad to hear it.

[metalikhan]

Wow, birdnerd! Reading your post almost felt like deja vu to me.
Have you talked to your neurologist (or maybe a rheumatologist) about the possibility of CFS or fibromyalgia? Maybe testing trigger points?

Chronic health issues can be challenging! There are strategies that can help control them -- you're already learning about dietary strategy. By God's grace, I've been cane-free for 4 years; but I work at maintaining what He restored. Not easy but it is doable.

What a blessing that your tests are turning out so well! Praying for you, gal!

[birdnerd]

Thanks!

CFS was ruled out years ago.
Have not considered fibromyalgia, but I'll look into it. It doesn't seem to match up with what I know of the typical symptoms, but ... *shrug* Can't hurt to ask and research, eh?

Congrats on the cane-less-ness. I use one now and again because I was born with my hips dislocated. From time to time, the right one snaps out of socket again. Grr. It feels really good when it stops hurting.

Hang in there and keep trying!

[almarquardt]

Another idea to research: My husband suffers from tremors as well, and went through a similar battery of tests. Turned out his has Benign Familial Tremors. It can easily be fixed with taking one pill a day.

I'm also thrilled the doctors were able to rule out the worst possible scenarios. Yea, God!

[birdnerd]

Yah, but I'll tell you, a half-dozen years ago when I first started having food allergy issues, I was told 3 times "You might have cancer of the ___". (Each time, the subsequent "prove it" test came back negative -- no cancer). The first time, I was mentally cooked. The second time, I was a little irked. The third time, I really had the "Fine! Just figure it out already!" perspective -- I'd been sick for 8 straight months at that point and my weight had dropped from 120 to 85 ... and is still not back up to "normal for me."

I'll look into Benign Familial Tumors, but taking a pill is not an easy solution for me. I have very adverse reactions to just about everything.

Thanks.
(:
Birdnerd

[beckyminor]

Praying that the right diagnosis and treatment will turn up for you...when it does, you can strike a deal with the Health channel to be a subject for that show, Mystery Diagnosis, right? A little extra cash for your trouble can't hurt, right?

Okay, I'm done being flippant now. Really, I admire your perseverance through what must be very trying.

[birdnerd]

Thanks. The perseverance took a looong time to develop. I was pretty pathetic 20 years ago (in college for the first time). I used my disabilities as an excuse to get out of everything. These days, I'm much more reasonable about what I can and can't do.

I think things are sorted out again. My weight is finally back up to 105, which is a lot closer to normal for 5'4" than 85. I'm skinny as a rail, but *shrug* I'm okay with that. The headache is mostly gone. The tremors/twitches only get irksome from time to time.

The ultimate solution, of course, is that Jesus will be here between 2-3 am ... I just haven't figured out the day, month, year, or time zone in which it'll be 2-3am. As I understand things, we get our glorified bodies at that point and all these hokey health problems won't be part of the deal.

Y'know, one of my coworkers suggested I contact Mystery Diagnosis. I don't know anything about it since I don't do the TV thing. Anyway, I'm not interested in having a camera up my nose (figuratively or literally).

(:
Birdnerd