myoclonus links

[Guest guest]

http://www.mayoclinic.org/myoclonus/diagnosis.html

http://www.mayoclinic.org/myoclonus/treatment.html

[Guest guest]

Thanks for the pointers, Barbara. Below is not a criticism of YOU, of

course, but just my usual rant.

Unfortunately, nowhere in the part about diagnosis does it say anything

about what myoclonus LOOKS LIKE. But at least at the very end, it mentions

mito, under " other " .

In the treatment part, valproic acid (Depakote) is featured. As you or

others may recall, I'm on a bit of a crusade over this evil substance. For

several years, my " first " unaware and uninterested neuro prescribed a LOT of

Depakote. He checked levels of this stuff in my blood every few months, to

be sure I had a therapeutic amount but not too much. He initially asked

whether I had known liver disease, and I said no. He never, initially or

ongoingly, did any liver tests. My primary doc during this period once did

liver tests as part of a general screen (what the heck is the increasing

PROBLEM with me?), which revealed that I had a couple of just-a-bit too-high

values, but he didn't seem too interested and certainly didn't tell my

neuro. Much later, I've developed hepatic steatosis. ALSO later, I've

developed Multiple Symmetrical Lipomatosis (MSL). And I've always had MERRF

(M is for myoclonus, of course), but it wasn't proven until recently.

I expect I was destined to have mito symptoms (actually DID, all my life,

but only gradually increasing until the last few years). However, I also

believe that the Depakote was somehow involved in making it worse,

especially regarding my liver function and the MSL.

Just because I have a RARE condition doesn't, in my opinion, let that first

neuro doc off the hook, for not being more careful about the documented side

effects. Sure, there is a cost tradeoff in testing everyone for rare

conditions, but that's cold comfort to me. Kind of like how Katrina victims

feel, when they heard that the Army Corps. of Eng. COULD have built the

levees to Cat-5, but on the basis of a COST-BENEFITanalysis, decided to only

build to Cat-3. Oops, bad guess. Cold comfort indeed.

By the way, when I tried to get medical records from this neuro, I found out

that he had lost his medical license and left the country. Can it be, that

as a result there is NO record I can access, about any of this treatment?

What a screwy system THAT is. There should be some central repository or

something, for this situation.

Steve D.

> Date: Wed, 28 Sep 2005 12:47:12 -0500

>

>Subject: myoclonus links

>

>http://www.mayoclinic.org/myoclonus/diagnosis.html

>

>http://www.mayoclinic.org/myoclonus/treatment.html