Hi,

Can you guys tell me if anyone else has this? The doctor at Hopkins said it was probably immune mediated small fiber sensory neuropathy.

I get random water or stinging sensations all over my body. It often feels like something cold or wet, but can be a burning in the limb. It can be provoked by pressure on a limb, my foot rubbing the inside of my shoe, or just totally random like rain drops.

The hopkins website says "A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic."

That sounds like my case.

I didn't have any of these symptoms until I started taking antibiotics from one of those crazy "Lyme disease" doctors. Shortly after starting a dose of minocycline, bactrim and rifampin I noticed strange sensations all over my body that felt like snow flakes, water drops, stinging or buzzing.

I call these Lyme Drs crazy because that is what I now believe, but got sucked into it by a doctor I was referred to by a message therapist who was treating my myofascial pain syndrome. She said I should get tested for perpetuating factors and this non-insurance doctor tested me and said I had Lyme disease. I wasn't sure but thought it couldn't hurt to try to treat it, so I searched for another doctor who only treats Lyme. I wish I hadn't done that. After maybe 4 months I decided it was nonsense and stopped. Well, I think the antibiotics gave me this immune condition, if that is what is doing it because I never had it before and it started right after the antibiotics.

I had the nerve problem for about 6 months or more and then it went away totally!!! It was gone for a year or more and I was very happy with my life and moved on thinking it probably passed. Now it came back!

I had a cold that lasted for 15 days and during the last couple days of the cold I noticed the paresthesias/neuropathies again and was very upset.

I don't know if it was the cold or something else that triggered my immune system, if it is that and now my immune system is messed up because of the antibiotics.

I'm scheduled to see my general practitioner to review the results from Hopkins, which are almost two years old now and they were negative and it eventually went away. But, now I want to know if there is anything I can find out again.

If anyone can give me any advice that would help. I'm considering Mayo clinic as well or just getting immune tests or anything.

Thank You

And yes, as one who has been through an acute onset, body-wide painful burning neuropathy, and who had tests up the wazoo which documented non-length dependent small-fiber damage (through skin biopsy) but did not ever find a cause (all other testing was negative or normal), but in whom autoimmune molecular mimicry mechanisms were suspected but never proven, I can say this a very problematic presentation.

I think you were right to go to Hopkins, which may have the best overall neurology department in the US (a lot of people who have been to Mayo have not reported as much neurological savvy there, I'm afraid). There are other places at which doctors/researchers are familiar with this, including Massachusetts General, the Jack Miller Center in Chicago, and Columbia/Cornell-Weill Center for Peripheral Neuropathy in New York (where I went and am followed). But even at these major research centers, they'll admit not a lot is known about this compared to other neuropathies.

What I can say is that many liken it to an axonal, sensory Guillain Barre situation--instead of an autoimmune demyelinating neuropathy leading to motor symptoms, the molecular mimicry happens to match up to one's small, unmyelinated fibers--the ones that subsume the body's sensations of pain and temperature--with resultant pain, burning, paratheses, numbness . . .

You can look for posts under my name (I spend a lot of time at the neuropathy sub-forum here: http://neurotalk.psychcentral.com/forum20.html) and also look through these:

http://jnnp.bmj.com/content/72/4/540.full#R17

http://physrev.physiology.org/content/82/4/981.full

http://www.medlink.com/medlinkcontent.asp

http://neuromuscular.wustl.edu/senso...tml#idiopathic

I have my doctors appointment tomorrow. So, I should get tests for:

1. Sensory neuropathy complete antibody panel
2. Ganglioside antibodies (all)
3. Celiac antibodies and Celiac DNA test ( I was already gluten free prior to this recent attack though, but I didn't start that until a year ago)
4. Anything general auto-immune or viral titers.

This is very distressing because of not knowing what it is so I don't know the course it will take or what will make it activate or how to cure it, but on the good side it appears to not be one of the really bad conditions.

If I could just get some kind of confirmation that it is the immune system and exactly what antibody and know they are working on a cure to turn off that antibody that would make me feel better.

I also want to ask you about how your condition has behaved compared to mine and discuss other things. I'll send you a PM.

I'd really like to get some auto-immune treatment that I keep seeing promising new reports about, but if I at least know what this is and that it won't get too bad I'll feel much better. It would be even better to know that they are working on an auto-immune stopping treatment that can be used for this and will come out in a few years. The good news is that last time it happened I seemed to completely heal and from what I can tell this is not one of the really bad ones.

Maybe I should start supplementing things to help with nerve healing. I didn't want to take any supplements before I get tests done.

Should I PM you more or reply in thread?

Thank You.

applewine,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

--as I'm very public about my situation.

I am fortunate in that my symptoms have waned over the years (this all started April 11 2003 at around 11AM--it was that sudden), though I am still left with residual symptoms and am prone to all sorts of compressive neurological effects now--these are thought to be related to re-enervation I've gotten over the years (which has also been documented by subsequent skin biopsies). The theory is that as nerves regrow they fight through and around various tissues and often don't wind up in the same pathways as they once were, so they are more prone to compression by other bodily structures. (I even have to watch where I build muscle by weightlifting now.)

The fortunate thing about many acute or sub-acute presentations that involve an autoimmune cascade is that they may peak and then subside slowly over time, although recovery tends to be patchy and incomplete (very much as Guillain Barre syndrome is described). Of course, this depends on cause--the slower onset presentations have a greater tendency to be chronic (again, much as CIDP, or chronic inflammatory demyelinating polyneuropathy, which is often considered to be the 'slow' version of Guillain Barre, is described).

I never received immune modulating treatments as there was no documentation of antibodies--my treatment was basically palliative for a long time (a lot of Neurontin, which I eventually weaned myself off of years later). But it IS a good idea to get those antibody tests done as if one or more can be documented it might help get one the more expensive immune modulating treatments such as IvIg or plasmaphoresis.

Many of the ganglionopathies and neuronopathies may present with symptoms beyond the limbs/extremities (face, trunk, head), but there are neuropathies that can present this way as well, notably some associated with vitamin deficiency, celiac, and some toxins. The trick is to find a doctor willing to go to the lengths of testing if necessary, which is why I mentioned the centers in my other post--too many local practitioners just have no idea of the many possible causes and presentations.

I went to my general doctor and explained everything. Apologies for the long post, but it has a lot of my thoughts on this. She said she didn't want to order all the really advanced antibody tests until she ran some more basic ones and what she knew about first. I don't think she is testing for tons of things right now. I wanted more but she said I could just end up with excessive charges if we jump too far at once. I don't think I got any virus titers and I forgot to mention Celiac testing. I should get the tests back Friday or Monday, but I'm not expecting much.

I also wonder if diet could be affecting this or affected my thyroid hormones. I was 6 months in to a ketogenic diet when these symptoms started this time and went off it immediately. The last time it happened I can't remember for sure if I was on a low carb diet before or after the symptoms started or how long. But it may have been 6 months into a low carb diet. I just read that very low carb diets can disrupt thyroid hormones and thyroid hormones can cause paresthesia. However, I don't know if it causes my type of paresthesia.

The problem is I had some paresthesias from leg compression while sitting years before I ever tried a diet like that. Back then it felt similar, but not random and not all over my body. It felt like water running down my leg when I would sit and buzzing in my thigh. I tried asking around to see if this is normal for pure muscle entrapment problems but haven't been able to find a person or Dr. who said they had seen that before. I had also developed a rounded/puffy face at that time which could mean thyroid hormone disruption, which was due to other causes or just from unhealthy drinking or allergy shots I had prior to developing that for a few years. That round/puffy face thing eventually went away after a few years. I think excessive drinking can be one cause of that, but I think I had it before I drank a lot and it was after I got those allergy shots. It lasted a few years either way, though I didn't continue the shots for more than maybe 10 shots over a month or two.

I find this whole thing very disturbing. I'd like to have answers about what is going on so I at least know what I'm dealing with here.

At Hopkins they just did that one test for small fiber neuropathy and then discharged me (also a nerve conduction test, which was also negative, but I had that before), so it seemed like they don't automatically do any more tests. I thought they would get other doctors involved and do tests for things that could cause it, but that didn't happen.

I would imagine that immune tests, hormone tests, and other tests would need to be done in order to determine what is causing it.

I would think that there should be some more organized effort to figure this out based on the type of symptoms. In my case my symptoms present a very specific way and in my case they also seemed to completely go away for over a year! It healed? "It" was inflamed, but minimally damaged? Will this always happen for me? I don't know. So, that seems like a very specific kind of neuropathy, because with some causes/tissues that probably wouldn't work like that.

There must be some clue based on the symptoms (or tests) about where in the chain this is happening even though it can happen anywhere along the chain.

I've also heard about "ganglionopathy". That seems to be a spinal cord thing, ganglionitis or dorsal root ganglia. Maybe mine is inflammation of the DRG in the spinal cord? Doesn't Herpes Zoster live in the spinal cord? I know I have that, but I don't have shingles. Can it ever just become a little active in the spinal cord?

From what I can tell they can't test for ganglionopathy. Or maybe they can do some spinal fluid test and look for antibodies or something, but I don't want to go poking around there unless I have to.

I would wonder why they aren't documenting my type of condition and categorizing with a name so you can identify others with the same condition and figure out what is going on. The problem with that may be lack of clear cut boundaries along a spectrum, but some people must have it just like I do.

Maybe the patients have to start creating names for these conditions. A unique identifier is an important element in order to reference information for analysis.

I'm going to start supplementing with B complex, mutli-vitamin, multi-mineral and additionally methyl b12. I suppose it is possible that certain nutritional deficiencies could cause these symptoms.