Hi,
Just got back from the Neurologist, the SFN skin biopsy cam back normal. The one on the foot had a middle score, the calf was low normal, just one point above abnormal.
The doctor is thinking it is Auto-immune, related to my SLE Lupus. He is diagnosing it as "Polyneuropathy from other unknown disease". I thought he didn't want to call it Ideopathic, as I was kidding him at a earlier visit about the Neurologist copping out with that Dx.
So with a normal Nerve Conduction and Punch Biopsy, leaves me back at square one. I guess in the long run, it doesn't really mater, as all are uncurable, Nd use the same Rx... At least if it is SLE the anti-malarial drugs might help, or arrest the progression. I am currently taking Cymbalta, seems to be reducing nerv pain some.
So the Neurologist has dumped me back to the Rheumy, and she doesn't want to see me for another 3 months, to give everything a chance to work.
This is my lot in life...

Thinking of you. Sorry...

Plaquenil may help with the fatigue and sometimes joint pain related to autoimmune disease, but not nerve pain. There is some research that indicates it can slow progression of some autoimmune processes, but it's hard to prove or track this when so little is known about the progression of AI diseases to begin with. Keep in mind that it take a good 6 months or so to start working. Make sure to get a base line ophthalmologist evaluation before starting the Plaquenil and then EVERY 6-12 months after that.

I'm glad you are getting some relief with the Cymbalta.

The skin biopsy can be repeated down the road if your continue to get worse...and maybe the borderline level will have changed...allowing you to qualify for IVIG or another treatment.

I went for my eye test yesterday, the Optimologist told me that the side effect of retina detachment takes 5 years to manifest, that it is accumlative. She called the 3 month test a benchmark, she has been in the field for probably close to 40 years. She said that the Rheumy's are over reacting, but a lot want a 6 month exam, to cover themselves. Anyway, passed the eye test, but still have to do the Field eye test in December, to complete it. She told me that my blurred vision was not coming from Planquil, or from any problem with my eyes, so maybe a manifestation of SLE also... I always thought the blurred vision was related to low blood sugar, but I have tested my glucose during the episode and it is normal. I also get blurred vision when I am have a allergic reaction to the new carpet in my office...

I have been on Cymbalta for 3 weeks, it has helped with the neuropathy pain, in the morning and most of the day, but at night it is still painful, I am hoping that will kick in more, as time goes on. The compounding cream the neurologist prescribed me, hardly does anything for the burning pain... I am over most of the side effects of Cymbalta, but the stomach intestinals problems are solved with a antacid.
I am a cash patient, so if the Rheumy prescribes IVIG treatments I will give it a try. I realize it is pretty pricey...

The chance of eye damage from Plaquenil is extremely rare...but it is permanent so best to be safe and have eyes checked. I do full check once a year (with field of vision) and a quick exam every 6 months...because i have been on Plaquenil for 6 years now. It is cumulative, but even after 5 years, it is rare.

IVIG is more then just pricey. My monthly infusion runs about $25,000. Of course insurance doesn't pay that much in the end, but they do pay over $10,000 a month.

Hopefully, the Cymbalta will continue to work for you.

Hi Jon, The more specific the diagnosis, there may be comfort in having a thing nailed down but you are right in the fact that once you get past diagnosis there is not much to hang your hat on anyway. You know the drill so take care of your nutrition, excercise as you can, and cope as best you can. Lows and highs, that is what a roller coaster is all about right. Good Luck, Ken in Texas

Your problems may be at the dorsal root level along the spine.
It takes time for the peripheral sites where your biopsy was taken to dwindle away.

We have a dorsal root thread here:
http://neurotalk.psychcentral.com/thread147771.html
Lots of links in it explain how the dorsal roots behave and get damaged.

Wow, spent 5 hours at Costco pharmacy to get my Rx filled! Since the eye doctor didn't get the report to my Rheumy, and she was at a Doctors conference, I had to get a emergency pill advance, then after two hours, I found out the doctor didn't send my thyroid prescription, so they said it would be another two hours, then when the pager went off, they had filled the pill advance again, so I had to wait some more for the thyroid meds. The lady working the counter was very rude, and after 5 hours, even worse... You would think I would get a apology forthe 5 hour wait... Not the best thing to go through with neuropathy pain.
Wow, $25k would be a lot to pay a month, since I am a cash customer! I wonder if it is inflated for insurance, usually I get 50% off for paying cash.
Dorsal root damage would make sense, where in the spine wold the damage have to occur? My cervical and Lumbar spine look pretty good, but the thoracic spine is in bad shape, with a couple of possible spinal cord restrictions. T12 was had a old fracture, that didn't heal right, it is just under the bottom ribs. The entire T spine has OA and thinned discs. My chiropractor seemed to think I had a couple of bad falls possibly surfing to cause that much damage. I showed my Neurologist the x-ray, he just shrugged and said you can't tell much from x-rays... (he was done with me...)
I will have to read up on the Dorsal root, if it was damaged by SLE, that would fit, or Maybe the fracture? it makes sense that the hydroxyclorquine would not heal a 30 year damaged nerve system, but one can always hope!
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I realize that I would need some MRI views, this was taken 7 years ago...