[lefthanded]

I am halfway through my EMG/NCV testing . . . and my doctor said that my feet, done on Thursday, appear pretty normal. He said that it may be that I will need a skin biopsy to make any further determinations . . . oh, goody! (I have my hands tested today, and with some very prominent carpal tunnel symptoms, I expect some findings on my hands today.)

Has anyone had the skin biopsy done and what is it like? Who does this test?

I am up to 1500mg of Neurontin so far, and at the most, there might be a slight decrease in intensity of symptoms, but they certainly have not gone away. In fact, it is hard to tell. I am sure my neurologist will want to know at the follow-up on Monday how I am doing. What do you tell a doctor when you are not sure? Should I have some idea if the Neurontin is working or not yet . . . after being on it now for a full month?

[mrsD]

with Neurontin and Lyrica is that they cause fluid retention. Then the fluid
retention causes carpal tunnel like symptoms. And that is not good.

Your dose is pretty LOW to expect significant pain relief.

I have battled carpal tunnel for 30+ yrs...and during my pregnancy at age 34
it was totally disabling. I could not write, sew, do anything. I had a EMG done at a neuro and had lost 80% function in both hands. After delivery it improved, so I never got the surgery. But it flares up, I wear my braces to bed, and am careful in the garden. (I had a steroid injection in the right wrist to get thru the pregnancy on doctor's advice).

Since I started benfotiamine, I've had the best results yet, of anything I've tried. (second best was P5P form of pyridoxine).

When the body is low in thiamine (and diuretics deplete this vitamin) the tissues retain fluid. This is one sign of wet beriberi (which is often ignored by doctors). In its early stages, edema is the most obvious symptom.
Most antibiotics deplete Thiamine as well...including Cipro.
http://www.emedicine.com/med/topic221.htm

[glenntaj]

--to determine, by electron microscopy, your intraepidermal small-fiber density and condition, is the current "godl standard" for determining small-fiber damage. The small, unmyelinated fibers that subsume the sensation of pain and temperature simply are too thin to be accessed through nerve conduction studies or electromyography--this is why its possible to have normal NCV/EMG studies and still have extensive neuropathy symptoms.

The skin biopsy is MUCH less invasive than nerve biopsy, and no where near as uncomfortable as EMG/NCV. A few 3mm skin circles will be taken from you for analysis after a topical anesthetic is first injected. The injection is the worst part, and it's not bad at all, and over is seconds.

Once the samples are taken, a few band aids are all that's needed for you to walk out minutes later.

Take a look at:

http://www.medscape.com/viewarticle/563262_3

[Ides]

I recently wrote this in response to someone else whose insurance company was balking at paying for this procedure. Not all parts of my response will apply to you but the rest will.

I had punch skin biopsies [2 places] to test for small fiber nerve damage. [BTW, I do have it.] My skin punch biopsies was performed by a dermatologist under the direction of my neurologist. The containers to place the specimens were supplied by the lab that was going to analyze the test. That was the lab at Columbia University. It is my understanding that the other lab that performs this analysis is in Utah. At the time I had my biopsies those were the only two labs in the country to do this analysis.

Someone in your network certainly can perform the actually biopsies. The insurance company is probably balking at the cost of the specimen analysis. I dug out my EOB from my insurance company for the lab charges. In October of 2006 the lab charged $1,716.00 to anaylze the 2 specimens. My insurance company paid them $1,348.04.

At least two specimens must be taken. One is taken in the problem area. The other specimen is taken from an area without symptoms. That way there can be a comparison.

[lefthanded]

At this point it is not a given I will even have the biopsies. My neuro doing the EMG/NCV testing just mentioned them when I asked what else can be used to find the cause if the tests he was performing we inconclusive.

Will the treatment be significantly different if I do or do not have them done? What I mean is, once it has become an issue of small fiber damage, aren't there basically a set of treatment options that really do not change if you have the test or if you don't?

[mrsD]

This word is misleading when it comes to small fiber damage.

The only real treatment is removing the offending substance, and creating
an environment where the nerves may heal.

http://neuroskinbiopsy.mgh.harvard.edu/smallfiber.htm

1) if a toxin or drug is causing this...removing it has to be done.

2) if an autoimmune process is going on (gluten) or other, then that should
be measured. Some immune suppressing drugs may help (or may not).
Going gluten free for those reacting to gliadin, often helps. We had several people in the past for whom this worked wonders.

3) Prediabetes, insulin resistance, and frank diabetes must be handled appropriately. The sorbitol pathway is what damages the nerves.

4) nutritional challenges, such as low B12, MTFHR folate genetic errors ID'd,
thiamine deficiency, low iron, EFA deficiency all can be remedied and healing
may occur and damage ended. Some patients find mitochondrial supports very effective. (l-carnitine and CoQ-10)

Therapy for small fiber as it stands today involves typically symptom relief.
There is a list of treatments in the stickies. They are called "treatments" but they are only symptom relief...they do not change the course of PN.

The only REAL treatment is IVIG.

This sticky has some good posts on it:
http://neurotalk.psychcentral.com/thread177-2.html
post #13 is an old list I used to have up a couple of years ago.

I'd add to it, but we have an edit time of 24 hrs.
(I would add r-lipoic acid instead of alpha lipoic, and benfotiamine to the thiamine entry). R-lipoic acid is very effective for insulin resistance.

Many people over 40 (some experts say all people over 40) have some degree of insulin resistance. While it is not diabetes yet, it has potential for causing the beginnings of sensory PN. It will show up with a fasting INSULIN level being taken--which will be elevated. Often changes in diet, tending to less carbs and more protein and 10% more good fats will keep it in check. Some people use oral antidiabetic drugs for this..like metformin, or Actos. Females with polycystic ovary disease
often have insulin resistance.

So I think it is a good idea to have the skin biopsy if you have significant issues. It will tell you if damage is present. And then you go from there.

[MelodyL]

Mrs. D.

How much R.Lipoic should a person with Type 2 take??

Thanks much.

Melody

[mrsD]

Once people are on medications, for diabetes, r-lipoic acid has to be used
very carefully. It will lower blood sugar, and perhaps then your medications would need to be adjusted.

In your particular case, you are in that ACCORD study....don't they have rules
that you cannot take things that interfere with the blood sugar?
Most of the time studies are very strict and restrictive.

You should ask your doctors there if it is allowed.

The benefits of course of r-lipoic on the PN itself have been published for quite a while now. (as alpha lipoic acid). R-lipoic just requires much lower doses.

Here is a new paper from Russia in fact:

1: Zh Nevrol Psikhiatr Im S S Korsakova. 2008;108(2):27-30.Links
[Implication of alpha-lipoic acid preparations in the treatment of diabetic neuropathy.]
[Article in Russian]

Al'-Zamil' MK, Brezhneva EV.

Twenty-eight patients, 17 women and 11 men, aged 40-70 years, with distal sensory-motor diabetic neuropathy of the lower extremities were treated with berlition, an alpha-lipoic acid preparation, in dosage 600 mg daily during 3 months. The treatment resulted in the significant reduction of clinical (sensory and motor) and neurological changes of lower extremity peripheral nerves.

PMID: 18427500 [PubMed - as supplied by publisher]

and here is an interesting paper... switching patients from alpha lipoic acid
to more costly less useful drugs..

1: J Diabetes Complications. 2008 Apr 8 [Epub ahead of print]Click here to read Links
Switching from pathogenetic treatment with alpha-lipoic acid to gabapentin and other analgesics in painful diabetic neuropathy: a real-world study in outpatients.
Ruessmann HJ; on behalf of the German Society of out patient diabetes centres AND (Arbeitsgemeinschaft niedergelassener diabetologisch tätiger Ärzte e.V.).

Heinz-Jürgen Ruessmann, President AND, Wilhelminenstr. 22, 46537 Dinslaken, Germany.

In this retrospective real-world study, we aimed to evaluate whether switching from the pathogenetic treatment option alpha-lipoic acid to drugs for symptomatic treatment of neuropathic pain such as gabapentin would be associated with changes in efficacy, safety, and cost-effectiveness. A cohort of 443 diabetic patients with chronic painful neuropathy were treated with alpha-lipoic acid 600 mg qd orally for a mean period of 5 years. After stopping this treatment, 293 patients were switched to gabapentin (600-2400 mg/day), while 150 patients remained untreated because of no acute symptoms. In the untreated group, 110 (73%) patients developed neuropathic symptoms as soon as 2 weeks after the end of treatment with alpha-lipoic acid. In the group started on gabapentin, 131 (45%) patients had to stop taking the drug due to intolerable side effects. Among the patients treated with gabapentin 132 (45%) were responders on an average dose of 1200 mg/day, whereas 161 (55%) were nonresponders at gabapentin doses up to 2400 mg/day. These patients required an alternative treatment which consisted of pregabalin, carbamazepine, amitriptyline, tramadol, or morphine as monotherapy or in combination. The daily costs for alpha-lipoic acid were considerably lower than those for gabapentin or several frequently used drug combinations. The frequency of outpatient visits was 3.8 times per 3 months during the treatment period with alpha-lipoic acid, while it increased to 7.9 per 3 months after switching to gabapentin or the other pain medications. In conclusion, switching from long-term treatment with alpha-lipoic acid to central analgesic drugs such as gabapentin in painful diabetic neuropathy was associated with considerably higher rates of side effects, frequencies of outpatient visits, and daily costs of treatment. The pathogenic treatment option represents for the practicing diabetologist an effective, safe, and cost-effective treatment option for the majority of patients with diabetic polyneuropathy.

PMID: 18403218 [PubMed - as supplied by publisher]

[MelodyL]

Actually, the ACCORD study is not primarily about diabetes, it's about heart disease in diabetic women. And about Blood Pressure. ACCORD stands for Action to control Heart Disease in Diabetic Women.

They are trying to determine who gets a heart attack first, the people who are in the intensive study, or the people in the conservative study. I was in the conservative study, but my body responded like I was in the intensive study.

Then, a few months ago, something happened and they STOPPED the intensive study and put everybody in the conservative study. Didn't affect me because I'm doing good. Thank god for that. But I'd like my blood sugar to be around 100 when I wake up in the morning. That's why I asked about the r-lipoic.

I see them on May 30th. I'll run it by them. I don't expect to find any problems. They are quite proud of me because I completely changed my way of life and broke their protocol. Something about my a1c going down lower then was expected in the protocol. They said "not good for the study, but very good for YOU".

And, from what I've gleaned from speaking to them about supplements, they have no faith in them whatsoever.

Don't worry,I'm not taking anything till I speak to them.

Thanks much.

Melody