NeuroTalk Support Groups - My skin biopsy was negative

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- - My skin biopsy was negative (https://www.neurotalk.org/peripheral-neuropathy/29857-skin-biopsy-negative.html)

Lailavia? To me it sounds as if.......

what all that's going on with you is not exactly what YOU or the docs THOUGHT is going on with you? If it is Endocrine-related...that could be a good thing, tho having thyroid issues myself I can assure you that 'fixing' things takes a LOT of honest communiction with your docs and a heap of 'tinkering'...If you read sites such as:

http://thyroid.about.com/z/js/o.htm?...e_Diseases.htm
and
http://www.endocrineweb.com/
These are complex processing organs in our body...they affect/effect just about everything?
It sounds as if the neuro docs have come to 'some conclusions', but the other docs haven't-so it's not a complete loss...DO NOT LOSE FAITH! Hopkins IS a place that looks at the WHOLE BODY/person and not the pieces....It's obvious that you are on a very messy, bad road to getting any diagnosis, but I believe that you will get one that can be dealt with..'
While I never felt that getting a whole slew of tests was the best way to spend my 'days off'? It ultimately will be THE best way to help you for the rest of your life!
And, don't forget, When THEY ask you about 'are you stressed?' Reply calmly, Well, yeah, I am, but then I can't walk normally, do basic housekeeping, hug my kids or grand kids [whatever?], Cooking is an issue of disinterest [probably the meds?] and well...wouldn't YOU be 'stressed' under similar circumstances? I believe it's part of the 'territory' in dealing with chronic pain! LET THEM KNOW that you have sorted that part out! Now urge them to TEST away! YOU want to know what the fruitcakes is going on!

Go get them tiger! :hug:'s in heaps! - j

Quote:

Originally Posted by cyclelops (Post 157907)

I did an extremely detailed genealogy of my family and got a lead. The condition I am looking at is rare and very specific to a certain country and due to their, well, how should I say it....umm, homogenous population and restricted travel and 'roots' .....................

However...I suggest that all of you check out the myopathy section of neuro.wustl under hereditary myopathies, or just in general............
................I have a big concern regarding the diagnosis of fibromyalgia, which simply means, fibrous tissue, and myalgia, which means muscle pain. .......... It is medical double speak. If you have 'fibromyalgia', something is wrong, you may have a significant disease they did not test you for, as you have to get past 'gatekeeper' tests. Too many people are being labeled with that and being sold psychiatric meds for pain.

By the way, there are hundreds of hereditary sensory or motor neuropathy/myopathies. You can't just go to a doc, and say test me. You have to present a case for a specific chromosome mutation.

cycleops,
I'm wit'cha on the 'fibro' issue. I think its a catch-all that is a precursor to
"I'd rather be fishing for trout than take this one on' -- i.e.they don't wanna have anything more to do with you.

On the other issue, there is a genetic link
to Immigrant Middle European Jewry, (esp.after WWII)
as a hereditary clue for PN.

I have been away visiting my Mom and am still on the cortisone so I am not feeling so well. I begged the doc to go off it but she said it would be too dangerous as my levels are too low. I didn't take it one day and felt so good. I can't stand this. The endocrinologist still thinks the adrenal suppression is from the epidural steroid shots. (IN JUNE) I have called several times saying how depressed and horrible I feel and keep being told I have to stick it out. They are moving up the ACTH stim test to middle of NOV. And they ran a slew of tests, nothing has come up abnormal! So now what?

On another note, I sent for my biopsy report, and it says the nerve fiber densities at all three sites are within normal limits although the distribution is patchy.....some segmented and fragmented fibers are noted....though there are no significant morphological features to define a neruopathy processs. Then is says a repeat biopsy is recommened in 12 months. what does all that mean? maybe I should start new thread? and why didn't the doc tell me that????????? All he said was it was negative goodbye.

then I went for my flu shot and also cause have noticed a dark dent on nose and now doc sending me to rule out wegeners, though I doubt my rheumy will even do a test.....and I completely forgot to mention that I still have the morning problem its like my brain has gone dead. My doc seemed standoffish I am probly paranoid but they are making me feel like a freak.

Dahlek, she ( the endo doc)ran tests on pituitary, an adrenal mri, hormone tests, and others.I don't know what to do anymore.there is a piece of the puzzle missing and now one can find it or seems to want to. I went to a heart doc and she scheduled a stress test, anther echo, and another 48 hour moniter....I had to push for the stress test even though the doc from hopkins recommended that. Whew!

On another note, I heard that a decision had been reached on my ssdi case, but my case was sent to the quality review board, so I really don't know what is going to happen. Was I approved? Will they reverse it? Blah. Can't wait to get off the cortisone.....but if it wasn't the shots, what is left to test? I have gained 12 pounds which I had just lost!!!!! Worse is this depression....thanks for listening. I am at a loss again. My legs have really been hurting from my "fibro" which my neuro does not like to acknowledge....like someone (sorry don't have your name) mentioned above, there is probly something else wrong but what?

Peace..........

--is it possible to post what was said in the skin biopsy report, including the intraepidermal reference ranges?

Form what you just posted, it sounds to me like there may be evidence of a nerve degeneative process, but often, doctors not really versed in this only look at the reference ranges for nerve fiber density, which were originally codified at Johns Hopkins and sort of arbitrarly designated as "abnormal" only below the firth percentile and above the ninety-fifth percentile, and while this may make sense from a statistical standpoint, there may be other morphological evidence there--comments on the condition of the nerves, whether there is swelling, overbranching, etc.--that might point to an "abnormal" results.

The idea that you should have another in 12 months certainly sounds like there is some evidence of SOMETHING going on.

Also, where was this report produced from? (I don't trust the pathology findings from places where this is not done regularly--and that sort of limits it to Hopkins, Cornell-Weill, Jack Miller, UCSF, Mass General, Jacksonville Shands, maybe a few others).

Thanks Glentaj,

I will dig out the report and post those numbers tomorrow i am just too tired now, had my dear granddaughter today and just getting some computer time.It was done and read at Hopkins. Thats why am a bit dumbfounded as to how fast this doc wanted to get rid of me....unless he didn't see the part of repeating in 12 months?

Ok I still do not have the energy to go get the report and type in numbers! I have been tutoring my daughter, she is doing a 12th grade online high school course and needs lots of help, and it is like a full time job. I can barely keep up with anything but at least she will graduate....we have been struggling for several years with home schooling and high school problems....I need to get her thru this before I completely fall apart! I will be back!

What my neuro told me is that sometime the demage in the nerves can't be seen in the biopsy since the demage is on the molecular basis - means that there is a problems with the channals in the nerves membrane.

Liza Jane - what you are saying leads to the conclution that most of us need to take CoQ10 in order to improve the mitochondrial work in our bodies.