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beatle 08-28-2015 08:18 PM

Clinical Trials
 
Many current clinical trials target specific areas of the body (e.g., injections in the legs) but in my case with all over pn, I think I will need some type of infusion.

Effect Of Mesenchymal Stem Cells Transfusion on the Diabetic Peripheral Neuropathy Patients
https://clinicaltrials.gov/ct2/show/...m+cells&rank=1

But when? :confused:

beatle 08-29-2015 12:22 PM

Is anyone aware of any other transfusion based clinical trials other than the one above ^^ being conducted in Cairo, Egypt?

en bloc 08-29-2015 02:17 PM

I'm not sure about 'clinical trials' going on right now, but what about IVIG...have you tried it? If you have a positive skin biopsy, then approval might be possible, even without a positive autoimmune condition.

beatle 08-29-2015 03:27 PM

I have not tried IVIg but my punch test was negative.

Patrick Winter 08-29-2015 04:51 PM

Quote:

Originally Posted by en bloc (Post 1166841)
I'm not sure about 'clinical trials' going on right now, but what about IVIG...have you tried it? If you have a positive skin biopsy, then approval might be possible, even without a positive autoimmune condition.

I have a positive skin biopsy, and one of the better insurance carriers around, IviG is still not easy to get approval for. Have to show all kinds of reasons for it.

heb1212 08-29-2015 04:53 PM

Quote:

Originally Posted by beatle (Post 1166860)
I have not tried IVIg but my punch test was negative.

Just really curious... How can our punch biopsies (me too) be negative with such intense wide spread nerve pain? I wonder if there's central nervous inflammation that is the cause. My recent CRP was 17 but no one seems too excited about it.

madisongrrl 08-29-2015 05:47 PM

I get burning all over my body including my head. I have temperature loss up my arms. I may have temperature loss other places too, but at this point I don't want to know anymore. My punch biopsy was in my legs (2 holes) and was negative.

The punch biopsy could miss the places where the fibers are damaged. Or like in my case, they did not take the biopsy from the body part that likely has the most change of showing damage.

Neuroproblem 08-30-2015 02:51 AM

Quote:

Originally Posted by heb1212 (Post 1166881)
Just really curious... How can our punch biopsies (me too) be negative with such intense wide spread nerve pain? I wonder if there's central nervous inflammation that is the cause. My recent CRP was 17 but no one seems too excited about it.

There are many kinds of SFN, autonomic and PHN. not all of them will show Nerve damage, or inflammation. it could be the part of your brain that processes pain, and other sensations. Or it could be a nerve that is not close to the biopsied area. SIGNals from nearby nerves can transmit to other nerves as pain signals without actually affecting the other nerves.

take tooth paiin,infection for example. Even though 1 tooth is infected the pain is transmitted to that nerve, and the dorsal root, but since the nerves in the head all come to one point, behind the ear, it can easily transmited to other nerves, so you can have pain in the ear, pain in the temple, both lower and upper jaw, and headaches.

beatle 08-30-2015 12:38 PM

Quote:

Originally Posted by heb1212 (Post 1166881)
Just really curious... How can our punch biopsies (me too) be negative with such intense wide spread nerve pain? I wonder if there's central nervous inflammation that is the cause. My recent CRP was 17 but no one seems too excited about it.

I've had high CRP too.

beatle 08-30-2015 12:42 PM

I thought they might have changed my dx after my negative skin punch biopsy result but it remains unchanged. Then again, what could they change it to?


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