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Old 11-12-2008, 09:52 PM #11
dahlek dahlek is offline
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Default Biopsies are no longer considered the 'standard' per se..

Please take a look at this relatively recent set of info regarding auto-immune CIDP... It does address the issue of 'nerve biopsies' as important or not to diagnosis.
http://www.cidpinfo.com/diagnosis/index.aspx It includes two different 'set's of diagnostic criteria...you can tell if a doc is 'up to date' by how they approach all this?
I bring this up because the skin punch biopsy is FAR FAR preferable to diagnose neuropathies than what's called a full 'Seural Nerve Biopsy'.
I also bring this up because many here in the past have undergone this latter procedure with some complications and side effects. The only thing that it could do.....The Seural biopsy, that is, is prove that nerves are DEAD! The side effects of the procedure are rife with potential infections and many stellar insurance companies no longer cover this procedure as one necessary for diagnosis.
I had encountered one neuro [briefly for all of two office visits] until he'd suggested that I have this 'procedure'. I thot it peculiar until I realized that HE wanted to get this 'procedure' on his resume, when all other tests were clearly indicating my diagnosis - according to that CIDP-info site.... This was in 2004. I am truly glad that I'd declined!
Do the skin punch biopsy first, and if THAT is inconclusive, maybe then consider a seural biopsy...but only after really, really looking at all the pro's and cons. To me it's a very nasty procedure that seems now to be 'out of favor' and honestly? FINE BY ME! I was lucky enough that other testing [a sort of 9 out of 10 rule {biopsy excluded}] enabled me to escape the seural biopsy. In '04, the punch biopsy was still considered VERY 'experimental'. I do believe it's gonna be accepted practice soon, as it's soo much less invasive.
In all honesty, all either will do is tell you that existing skin has DEAD NERVES. It can prove your case for some things? But, it really will not change one whit how you are treated, nor how well.
Pain control, lifestyle modifications, and any immune therapies are key to getting by/and on with this stuff. Any which way, it's no pic-nic for sure! And we just hunker down and get on with it all as best we can. 's - j
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Old 11-13-2008, 09:38 AM #12
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In all honesty, all either will do is tell you that existing skin has DEAD NERVES. It can prove your case for some things? But, it really will not change one whit how you are treated, nor how well.

J,
I have to add something here that sorta clashes with your opinion.
My neuro ( @ Hopkins) had me have a skin punch biopsy done. When the results came back, he was able to determine that my body was still growing nerve cells.
The problem was that the destruction rate of my PN was greater than the re-growth rate.
This led to a Dx of trying to halt progression or at least try to slow it down to the point where my normal nerve cell growth could try to make repairs.
At the very least, so that no additional damage was done.
A recent EMG & NVCT confirmed the fact that my present state is not significantly worse than my test results of 4 years ago.
Progression has been slowed to a crawl.
This is not as cut and dried a result as you state- just confirmation of dead nerves.
The skin punch biopsy test can be very helpful diagnostically, and in treatment thereafter. (if done in/by a qualified research center, and results analyzed by a specialist knowledgeable enough)
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Old 11-13-2008, 02:18 PM #13
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Default skin biopsy gold standard

Quote:
Originally Posted by mrsD View Post
Your Avapro, belongs to a family of receptor blockers for angiotensin. I looked them up today in detail. I get no hits on "neuropathy"... BUT..

I do get reports up to 4% that they can cause rhabdomyolysis.
This is a breakdown in muscle fibers--
It occurs in mito disorders/damage
AND with the use of statins for cholesterol.

Rhabo can be mild or severe. But it always raises CPK levels
which can be measured.

It could be you are having mild mito damage from the drug.
Since this is not common...no anectdotal reports from PubMed
that I could find. However, the subject of rhabdo is huge.

Whenever a person has been on a drug for a while, and then something else comes up, doctors often do not look closely at the drug being used. It is sort of a tunnel vision.

from patientsville.com FDA reports:

http://patientsville.com/medication/...de_effects.htm

from RXlist.com: http://www.rxlist.com/avapro-drug.htm


So I think consideration of Avapro, may be warranted, since you cannot find any other reason.
I also think a viral trigger may be a culprit, and viral assaults are hard to find and prove.
I am wondering more and more if it could be viral but what does one do? I do not take a statin (never) and my CPK is normal low. I also stopped my Avapro for a month and noticed nothing different. Alas, I guess it still could be but this is what works best for me. As far as CIDP I guess that will be addressed but from what I have researched it doesnt really fit my symptoms though I know everyone can be different. I am symmetrical, have normal reflexes and normal strength and motor ability...the only thing is the burning "sand storm" feeling to my body. Well guess we shall see.
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Old 11-13-2008, 02:28 PM #14
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Lightbulb If you can take aspirin...

try this for burning:

Two regular AlkaSeltzers. This contains bicarb which blocks
histamine receptors. If your problem is a histamine release type thing/reaction, the AlkaSeltzer will block it temporarily and then will wear off in about 4-6 hrs. Environmental physicians use a product called TriSalts for this purpose, but I find the AlkaSeltzer works just as well.

I use AlkaSeltzer for severe burning. It blocked the burning I had with the last virus I had. If you cannot take aspirin, then there is another version, called AlkaSeltzer Gold, which is similar to TriSalts. But it typically needs to be special ordered.
It might have even been discontinued by now, given how often OTC products get reformulated.

I still think you should do the carnitine. See if that helps too.
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Old 11-14-2008, 09:41 PM #15
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Default skin biopsy gold standard

Quote:
Originally Posted by mrsD View Post
try this for burning:

Two regular AlkaSeltzers. This contains bicarb which blocks
histamine receptors. If your problem is a histamine release type thing/reaction, the AlkaSeltzer will block it temporarily and then will wear off in about 4-6 hrs. Environmental physicians use a product called TriSalts for this purpose, but I find the AlkaSeltzer works just as well.

I use AlkaSeltzer for severe burning. It blocked the burning I had with the last virus I had. If you cannot take aspirin, then there is another version, called AlkaSeltzer Gold, which is similar to TriSalts. But it typically needs to be special ordered.
It might have even been discontinued by now, given how often OTC products get reformulated.

I still think you should do the carnitine. See if that helps too.
THANKS MRS. D so much for all your answers. I will definitely order the carnitine and add it to my "pharmacy". I wil also buy the alka seltzer...nothing to lose.
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