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Old 11-14-2008, 09:37 PM #1
sbvcrn sbvcrn is offline
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Default Skin Biopsy Negative

I am so disappointed. EVERY test I have had is normal including the biopsy, in fact the peripheral neurologist specialist said it was great! I know it might not have told me what caused it or how to treat it but at least I would have something tangible. Now...nothing. The doctor suggested I might have Central Sensitization syndrome. He suggested I try Cymbalta...maybe I will as he gave me samples. I will add the carnitine to my mass of meds and supplements. I was in an auto accident in 2005 but the burning only started about 18 months ago. I dont know if it is worthwhile searching out other docs when this guy specializes in it and the biopsy as great!!!! The lab that did the biopsy was Therapath in New York. My epidermal nerve fiber density test showed: rt. thigh result 17.11, abnormal less than 6.8, low normal 6.8-8.0, the right calf result value was 9.04, abnormal less than 5.4, low normal 5.4-5.7. As I have previously posted I have had a bunch of other tests, many quite sophisticated and all normal. Anybody else out there like me?
Today, fortunately, the doctor could "FEEL" my upper arms...cold as ice when my hands, lower arms and shoulders were normal temperatures. These cold areas feel like they are burning however. These burning sand sensations are feet, legs, hands and arms. He offered no explanations for this. So I am really down and maybe dont never belong on this forum....
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Old 11-17-2008, 11:34 AM #2
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Default Did they say what a HIGH

Normal was? Just asking, because sometimes during this stuff hyperactivity can and does occur. Doesn't hurt to ask. Asking is free.
Only thing I'd think about is what 'differently' have you done since 2005 and onset? How had your life or lifestyle changed? Sometimes simple silly or stupid things change that can cause problems.
Hope this helps! - j
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Old 11-17-2008, 01:04 PM #3
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Lightbulb What this says is:

You do not have DAMAGE... and that is good.

You do not have to have damage to have abnormal sensations, parethesias, etc.

Inflammatory issues, can be elevated cytokines (chemical messengers) that move from cell to cell. These are released during infections, both viral and bacterial.

Also histamine does react at the skin level, and is released by foods, and other kinds of reactions to environmental things.

One thing you can do is find an environmental physican who may help. This is often done for kids, but it can work for adults as well.

Sometimes it takes a long time to find a culprit.

I watched some Discovery Health yesterday on cable on our On Demand feature. It had a documentary of a young woman who went for 10 yrs and about 40 doctors to get the proper diagnosis of Lyme disease. It was pretty amazing!
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Old 11-17-2008, 05:08 PM #4
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Default

Thank goodness your biopsy IS negative. That in no way doesn't mean something else is not going on. I see you were in a car accident.

I am 21 years post accident...still causes me great misery. The docs can't figure out what is causing what at this point, my Sjogren's, Autonomic Neuropathy or Sensory Neuropathy, which are part of the SFN or aging on top of trauma.

I was clocked pretty well by a truck....and my bells are still ringing.

My stupid ER doc 21 years ago didn't run CT scans and missed huge injuries. He is in research now. It took 15 years to get a spine MRI!!! You have to love HMOs.

I do hope they find a cause for your misery so they can relieve it. It is horribly frustrating to have things come back normal and to know you are sick.
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Old 11-18-2008, 11:41 AM #5
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Lightbulb anti-inflammatory...

I've been looking up the new data on curcumin (mostly because of a thread by pabb here at the vitamin forum, and also for Melody).

What I found was a study at Michigan State referenced on Wikipedia..about reducing viral replication.

This might be a thing for you to try, sbvcrn.
http://en.wikipedia.org/wiki/Curcumin

The product by Doctor's Best has the piperine in it.
http://www.iherb.com/ProductDetails....=1&pid=13&at=0

The Parkinson's community has been posting about curcumin for quite a while, so if you search at PD here you can find their posts as well.

The fact that this spice may hit on both possibilities for you,
viral and inflammatory, makes it look worth trying.
Certainly it is much less problematic than RX drugs, esp Cymbalta which has liver damage as a potential!
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Old 11-18-2008, 08:50 PM #6
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Default Negative skin biopsy

Thank you for all your answers. It is so darn frustrating. Nothing has changed in my life since the accident I had in 2005...subsequently shortly thereafter developing cervical dystonia, aka torticollis (usually a funny looking twisted neck with pain). I receive Botox injections every three months (no, not to make my neck look pretty...although the one side does look better than the other) and this decreases the pain and keeps my head pretty straight. I have always wondered about the toxicity of Botox but everything I read does only positive uses for it in neuropathy and three neurologists say there is NO connection between the Botox and the neuropathy. The dystonia is felt to be secondary to the accident. I do have some cervical spine anomalies since the accident but nothing pinching on any nerves and my problems are upper and lower extremity. I will certainly check into the cucurin. Also, Mrs. D you mentioned alka seltzer gold...cant get it any more but you can make it yourself with acetaminophen (tylenol) club soda, baking soda and antacid if you want it. When I see my local neurologist I am going to ask to be tested for Lyme disease. I am holding off on the Cymbalta. Have read tooo many bad things including liver and cardiac, not to mention trying to come off of it. So far, while I am pretty uncomfortable a great part of the time, I am not an invalid although I feel things are getting worse.
Again thanks everyone. Know YOU ALL understand even if the biopsy is normal. Need to do more research on central sensitization and peripheral sensitization also.
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Old 11-19-2008, 09:20 AM #7
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Quote:
Originally Posted by sbvcrn View Post
............. When I see my local neurologist I am going to ask to be tested for Lyme disease. I am holding off on the Cymbalta. Have read tooo many bad things including liver and cardiac, not to mention trying to come off of it. So far, while I am pretty uncomfortable a great part of the time, ...........
Don't think you'll have any problems with cymbalta as a test
to see if it works for you. A few years ago (3-4) I titrated up on it
and increased the dosage after 2 weeks.
After 2 more weeks (about 4-5 wks total), I found it to be ineffective
and stopped taking it (I might have titrated down for a coupla weeks-can't remember).
I had no problems getting off of it.
None whatsoever.
I think that the problems might arise if you had been taking it
over a long period of time and your body became dependent.
But for the short haul, as a test -I don't think there are any problems.
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