Hi all, still fairly new here. I have been diagnosed with moderate-severe small fiber neuropathy at age 21. Right now I seem to be having luck using 60mg of Cymbalta, B12, and alpha lipoic acid, to control the pain. After all of the blood work, still no cause. Sunday, I finally left the hospital after a week long stay, due to severe myositis in my right calf. They did 2 DVT studies and an MRI, and determined nothing. I was treated with a few rounds of vancomycin, and a lot of IV corticosteroids. The swelling is down, and the pain is mostly gone, but the doctors never figured out why it happened. I am still taking oral prednisone to ween myself all the way off the steroids. I am starting to get really scared of what is to come next. I guess I really want to know, if anybody has anything like this, or has had similar experiences.

Thank you,
Joe V

Joe, I'm sorry to hear this. I made it until age 33. Have you been tested for vitamin & mineral deficiencies? Surely you have tested your thyroid. You will probably need to take control of your health by learning all you can about natural healing. Most M.D.'s can only take you so far. You may need to look to other types of practitioners, such as chiropractors and naturopaths.

Youtube and podcasts are a great resource. For example John Bergman on youtube, and podcasts I like: Extreme Health Radio, Raw Healing Patch, Main Street Vegan, The Power of Natural Healing.

I recommend eating a predominantly whole foods plant based diet. Large studies have shown that this results in less chronic disease. This will get you the most nutrients. Avoid processed foods. You might consider avoiding GMO's, such as in most corn and canola oil. Good luck.

What do you eat? Are you under a lot of stress? Have you been taking medications long-term? Exposed to any toxins that you know of? Diabetic? Tell us some more about your story.
Ron

Hi Electron! A little more about my story. I have always been a chemistry guy. Since I was old enough, I started working in R&D labs. When I got out of high school, I started my first paid chemistry job as a lab tech. In the 2 years I worked there, I had been exposed to some really nasty chemicals, which is what caused me to leave. The most remarkable were a large inhalation exposure to titanium tetrachloride, and several large inhalation exposures to 99.9% pure anhydrous ammonia. At the times of exposure, there was no notable nerve damage or ill effects. I am currently in the process of switching my diet to a mostly plant based diet. I have avoided processed foods and sugars most of my life, but even more in the last few years. When I do eat meat, I try to make sure it is grass fed, responsibily raised from local farmers. I have been losing weight since my diagnosis(down 35 lbs). I am currently about 30 lbs overweight. Vitamin and metabolic testing only showed a low b12. I was at 287, and the allowed low was 200, hence the b12 supplement. My b12 is now up to 674 as of a month ago. I am not diabetic or pre-diabetic, and have not been on any long term medications until i started the Cymbalta recently.Thank you so much for your reply!

--was way too low. I'm glad that you seem to be coming up now with supplementation, but the fact that you are up to "only" 674 after supplementation (how long has it been that you are supplementing, and with what dosage?) does imply a long-term deficiency.

The B12 deficiency, if fairly long standing, might well explain most or all of those symptoms. It's also a sign to look for autoimmune conditions of the digestive tract, such as pernicious anemia or celiac; B12 malabsorption is often linked to these (especially in the young).

The chemical exposure angle certainly needs to be investigated as well; there are certainly many neurotoxic chemicals. It may well be that there is more than one thing going on. Also, and not to put too fine a point on it, given that you have been overweight, have tests for thyroid function and advanced diabetes testing (such as a glucose tolerance test) been done?

Drugs are one of the major causes of myositis. So I'd look to your medications carefully. People can have idiosyncratic reactions to any drug. So don't discount that possibility...often it takes a decade or more for a drug to get on any list as causing problems, once it is on the market.

Autoimmune disease and infection, are also possibilities.

Many organic solvents cause damage to the bone marrow.
Did you get tested for bone marrow peptides/antibody excess?
Gammonopathies?
Exposure to some you've had but you may have been exposed to others you are not listing here.

titanium tetrachloride:
http://www.epa.gov/ttn/atw/hlthef/titanium.html

anhydrous ammonia:
http://www.ndhealth.gov/epr/resources/anhydrous.htm

The allowed low for B12 is outdated by 10 yrs now. The new low is 400pg/ml. I'd get your levels up to 1000 or more now.
How did you get so low? Do you use acid blocking drugs?
The reason for your being low and how long you were at that level, would impact your whole body. Are you vegan? If you were low for a long time, it will take a while to correct that.

Oh my, you guys have so much knowledge!!

Glenntaj, I have been supplementing my b12 now for about 6 months. I use 1000mcg normal swallow supplements. I actually just had an upper and lower endoscopy a few weeks ago, that ruled out Celiac, and any sort of IBD, via biopsy. I have also had TSH and T4 blood tests that ruled out any thyroid involvement. My A1C was normal, and so was my 3 hour glucose tolerance test.

MrsD, I have been exposed to many organic solvents as well. I do not think I have had testing for marrow peptides/antibody excess. My neurologist had ordered a blood free light chain assay, to check me for amyloidosis. Both my Kappa and Lambda were marked low as well as my K/L ratio was marked low. The doc didn't mention anything about it being low, but I have been meaning to make an appointment with a hematologist to check it out. All other testing showed no indication of any M protein. I do not use any acid blocking drugs. Both my mother and grandmother have been diagnosed with pernicious anemia, and receive monthly b12 injections. I have never been vegan.

You guys are too awesome, thank you,
Joe V

Pernicious anemia in your genetic blood line!

I'd up that B12 to 5mg orally active methylcobalamin daily on an empty stomach.

This looks like a lifetime treatment for you.

Joe V,
I forgot to mention Dr. John Hayes' website neuropathydr.com. The podcasts (beatingneuropathy.com) are really good in my opinion and what I take advantage of, but there are lots of other resources on his site. He is a doctor based in Massachusetts, specializing in neuropathy and other forms of chronic pain. I believe his specialty was chiropractic originally.
Ron

Joe V, no big revelation here your PN may be caused by a combination of the toxins and the B12 deficiency. It is interesting that I have lived about exactly 1 mile from a large anhydrous ammonia factory for over 17 years, but have never smelled any type of chemical odor.
Ron

I had relatives who lived their whole lives in Niagara Falls, NY—a city once renowned for its malodorous environment (anhydrous ammonia and a whole lot more)—yet they claimed they never noticed a thing. Were they just that used to it, or did the chemicals—over time—completely burn out their sense of smell (yet they could still smell other things)?

I've heard that people who grow up near abattoires also develop an immunity/insensitivity to the odor...

Doc