Small Fibe Neuropathy need answers
 

I've been to this board several times but never registered. There are some amazing stories here, I'm thankful that such a place exists.

As for me, I'm a guy, 36 years old. My symptoms began two years ago as burning on the tops of my feet and ankles, tingling sensations in my arms and legs and dry eyes. I also had burning on one side of my face. Over the next 6 months the burning spread up the front of my legs to my knees and I developed numb spots on my hands.

A neurologoits did aa lot of lab work and an emg which was all normal, recommended klonipin and sent me on my way.

The symptoms continued to spread. Over the next year I developed additional burning and stinging up the inside of my thighs and parts of my hands and forearms. The symptoms on my face came and went.

About 20 months into my symptoms I saw a second neurologist who performed another EMG, antibody testing, more labwork and skin biopsy which were all normal.

As my symptoms continued to worsen I was referred to a specialty center where they drew 14 vials of blood enrolled me in their DNA locus study, found I had dysautonomia on heart rate testing and recommended another EMG which was negative. Ultimately they decided I had a small fiber neuropathy or channelopathy, even though my skin biopsy was normal.

Upon seeing the results from the specialty center the neurologist where I live has diagnosed me with a pain syndrome.

My symptoms continue to progress. The pain that was just on the front of my legs has become circumferential up to my waste. In addition to superficial burning and numbness I now have deep muscle pain, cramps and fasciculations in all extremities that are so bad and widespread at times I become nauseated and literally cry from the pain. The pain in my upper extremties has also spread and gotten worse. My hands are red and swollen in a glove-like distribution. I have developed hypersnesitivity and pain to light touch just about everywhere on my body except my back and head. Clothing, water, a breeze all hurt.

I am on several of the common medications listed on this site. I use compounded lidocaine with some temporary relief at particularly bad sites and a TENS unit that partially distracts me from the allodynia when it is bad. I eat more B vitamins than Montel Williams plus carnitine, inositol, co-q10, biotin, allithiamine, alphalipoic acid, and several others.

I seem to get worse every week. Advice needed.

Welcome to NeuroTalk:

Have you investigated RSD? If you cannot tolerate cold or even a breeze, that is similar to RSD patients. Also red swollen hands?
They have discoloration, and spread to other body areas.

This is our RSD forum:
http://neurotalk.psychcentral.com/forum21.html

It might help if you could provide a photo with your post there.

Do you recall what you were doing when the first symptoms appeared? Were you exposed to drugs, toxins like solvents or heavy metals, vaccines, things like that? Were you ill with
a serious virus or infection, and did you use antibiotics for it?
Do you wear dry cleaned clothes often?
Do your symptoms ever seem better one day, and worse the next?

RSD is similar to PN in some ways, and very different from PN in others. Some doctors don't understand it and getting a diagnosis can be difficult.

My in-town neuroglogist seems to be barking up the tree of central pain sensitization syndrome. I have read about RSD and don't seem to be progressing through those stages.

Among many articles on SFN I think this one seems to gel with my symptoms the best. I cannot post a link but googling "ildcare chapter 3 small fiber neuropathy" will bring up the PDF

When it started I was on multiple rheumatologic meds for arthritis including a TNF-a inhibitor. I stopped all of those meds immediately. All neurologists seem to agree that if it were toxic it would not continue to be progressive 2 years later. The arthritis I was being treated for is not associated with neuropathy. I was tried on IVIG for the neuropathy. It seemed to provide about a week of relief after all but a few infusions but my neurologist did not regard this as significant and decided my neuropathy is not immune mediated because of this.

Were you on Plaquenil? We have another poster here with body burning pain, that followed major itching from Plaquenil.
Or Arava? This is a known PN causer.

Can you tell me what you were taking? and are taking now?
You can do this via PM if you prefer. Some drugs have a reversible history for PN and others do not, as yet have that data.

Muscle cramping can be due to low magnesium. Do you use a good magnesium supplement or have you tried epsom salt soaks?

RSD is also a central pain condition. Some of the members there are doing a special treatment called tDCS that is electrical and done on the scalp to reset pain pathways in the brain:
http://neurotalk.psychcentral.com/thread160980.html

With RSD in the periphery, this electrostim process is only done on the head. You might want to read about it too. I've been watching it myself.

I was on plaquenil at the time and stopped it immediately. I understand it's half-life in many tissues is quite long (6 months in the retina, for example) but plaquenil is more of a large fiber toxin if I read correctly and rarely so at that. Anyways I had been on it for maybe 6 months stopped it for 3months (didn't think it was helping) then restarted it again about 2 months before the neuropathy started.

I do take magnesium. Like my other pain symptoms the cramps are generally worse as the day progresses. I have read muscle pain and fascicualtions can be a part of SFN, fibromyalgia or lower motor neuron disease among other things.

Thank you for your help, btw.

I have another recommendation for you. Since your skin punch biopsy was normal you might want to investigate the new MRI procedure to evaluate the dorsal root ganglia (if you haven't done so already).

This post explains the procedure:
http://neurotalk.psychcentral.com/thread147771.html

Damage to nerve cells in these ganglia, can become permanent in some people. The nerve cell growth factors that repair damage to the roots, are missing genetically in some people.
There is research in this area recently, looking into repairing this damage with perhaps stem cell treatment. The damage can come from viruses like H. Zoster, or toxic drug treatments.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3287412/
This is a new interesting article on this subject.
This article mentions NMDA antagonists, and magnesium is one.
Just make sure your magnesium is an absorbable type and not
the OXIDE type. OXIDE is a poor form, and very little is absorbed from it. Other NMDA antagonists are Dextromethorphan (which cannot be used with SSRI or other antidepressants (Wellbutrin excluded). Also the RX drug Namenda does work for some people. Some of our RSD posters use it.
More on NMDA antagonists here:
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist
MSG --a common food additive-- is a NMDA stimulant, so avoiding it
may help with some pain issues. Some people are very intolerant of it, and others not.

If you are using high dose B6, it might be a good idea to cut back on that. Some people posting here over the years claimed to be very sensitive to B6. Don't go over 50mg a day, and perhaps even less than that. The official recommendation is less than 100mg a day but some cannot tolerate that. If you take a B12, I'd stick with the methyl form as you don't know if you have a genetic error of methylation. And take that on an empty stomach. It is best to have blood work to guide you and show if you even need to take it at all.

I have wondered about ganglionopathy due to the patchy distribution of symptoms. I have also wondered about channelopathies, some of which show low normal fiber counts on biopsy despite symptoms. Thank you for posting those resources - I'll read through them tonight. I have heard of ganlion imaging before and even read a case report of a woman having a thoracic ganglion biopsy to prove her ganglionopathy (while she was alive). Perhaps I can find someone interested in ordering an MRI.


I used to take a multi-B vitamin but stopped after I read about B6. Now I take B1,2,5,12, niacin, magnesium, alphalipoic acid, co-q10, l-carnitine, biotin, inositol and omega-3 fatty acid all individually.

You might want to try switching to the new Stabilized R-Lipoic Acid. 100 mg. replaces 600 mg of Alpha Lipoic Acid.

Doc

I would also like to add that since you take B5 and lipoic acid, that you take the biotin at a different time of day.

Biotin shares the transporters for absorption with the other two, and may work better if separated. (it is a similar thing with tryptophan and other amino acids which compete at the blood brain barrier for absorption-- taking tryptophan alone away from protein, is therefore more successful-- for those using it.).

Biotin also may be needed in high amounts. 5-10mg a day.
I have some biotin papers now on the Supplement thread:
http://neurotalk.psychcentral.com/post883889-166.html

Supplements and damaged ganglia do not appear in studies.
So it is unclear if they would be helpful:

I have found only one reference to an OTC supplement so far:
http://www.ncbi.nlm.nih.gov/pubmed/15293274
I'd use methylfolate(active form) if you decide to try this.