My head has been spinning since I was told last week that I have SFN and I am totally confused as what to do next.

Last July I started getting weird feeling in my right arm that would come and go. Then a few weeks later I woke up with bad back pain and tingling in my arms and legs. Years earlier I had whiplash, which gave me some herniations in cervical and thoracic spine so I went to the dr to check it out. They took MRI's which showed herniations but told me they didnt think that was the issue. months go by. The back pain just started to become minor about 3 weeks ago but some the sensation sin my arms have gotten much worse. My hands feel numby(i dont know if thats a word) most of the day. i do get what i call a cool burning in arms a legs. I even feel a strange tightness in the face. I was put on immipramine and cymbalta a few months back.

I was referred about 6 weeks ago to a doctor specializing in Peripheral Neuropathy. she took some tests and set up a glucose test and an emg.
all tests turned up negative except a small issue with my ulnar nerve.
she then took a biopsy of my ankle and thigh and the result was positive for small fiber neuropathy.

SInce I'm already on the meds that were supposed to help, prescribed by a shrink I went to see as this was driving me nuts. I'm not sure who is the right person to prescribe the meds and what I should be doing next.

Since I do not have the cold/hot issues or bad pain in the feet is that normal to have sfn without that.

what other dr's should I go for. what else can i ask the nerve doctor, what other tests should i take. (i just left a message to get the complete test workups she did.) also how can i tell if the Sfn is causing the numbness and pain in the arms and not the cervical spine.

I am very sorry to ask so much,especially as it hurts to type

Welcome to our PN board.

I think you should get tested for gluten intolerance, B12, and Vit D.

You need to find a cause if possible. Cymbalta does nothing but conceal symptoms. It does nothing for healing.

There are new posts on this subforum here that discuss various interventions.
http://neurotalk.psychcentral.com/fo...prune=-1&f=119

i dont know about being able to determine through an emg if the cervical spine is involved in causing your pn, but i have herniations in my lumbar and cervical and during an emg/ncs, i was tested in the area of the lower back and they told me the lumbar was not a cause of my pn in my legs. A few years later i had an epidural steroid injection in my cervical spine as a diagnostic/treatment for the pn in my hands/lower arms which didnt help by the way. It actually made my feet feel worse, electrical shock, stabbing pain wise, but didnt make my hands or lower arms feel any different. I dont understand it but that is what happened.

mrsD

Thank you. I left a message for the doctor to see what tests were done.

Let me ask you, is it possible for Sfn to start in the arms and not the legs?

Most PNs that are metabolic, are spread out in the body. Some start mostly in the feet because the circulation there is less than other body areas so the feet suffer first.

But when MY PN started, it was in the hands, because that is where the most stress was for me from work. Mine was from low thyroid function and it ended up in my feet too. It improved when I went on thyroid hormone finally, but getting that diagnosis took many years since it didn't show up clearly in blood work. I had to have a radioactive scan of the gland itself.

Diagnosis is really difficult for PN.... that is why this forum is so busy!

[QUOTE=mrsD;653252]Welcome to our PN board.

I think you should get tested for gluten intolerance, B12, and Vit D.

You need to find a cause if possible. Cymbalta does nothing but conceal symptoms. It does nothing for healing.



i have received the results of the glucose test:

all the numbers r in the normal column.
glucose 0H 97 mg/dl
glucose 2H 92 mg/dl
glucose 1H 195 mg/dl

the only reference is for the 0h and that is 70-105

i was told it was fine. if u see otherwise please let me know.

the other things that were done and told fine were

lyme disease antibody
hep b surface antigen
hep b surface ab
hep c ab
htvi-ii abs
rpr t pallidum
kappa lamdba free light chains
complement total
complement a
complement b
gliadin peptide ab
tissue transglutaminase
rheumatoid factor
slog ab-ssa-ro-/ssb/la
antiotension coverting enzyme
emg

i am trying to get earlier blood word.
any thoughts appreciated on other things to do.

i keep being told that my herniations are not the cause but its hard to accept that something else is.

one of the otherthings i don not understand is that my skin on my a=face feels tightened,and dry sort of like as light sunburn. does anyone with sfn here get that?

thanks for hering me vent any any thought always appreciated.

I don't see an ANA...ssa, ssb is for Sjogren's Syndrome....get a plain old ANA, with full ENA (extractable nuclear antigens).

Mine started in my hands....they kept telling me borderline carpal tunnel.

I had a bad head, neck, chest, spine injury in '87. I had Lyme in '94. Diganosed with PN in 2004......ANA went highly + in 2006. My Lyme test at most labs is negative, even tho, I was an acute Lyme case and was seen in the initial infection and had a rising titer then. Now Igenex is the only lab that finds my + antibodies. We know I HAD Lyme. I suggest maybe trying Igenex Labs.

I can't really isolate any one given time it came on, but thinking back, it seemed the Lyme issue made things really bad....but back then, they didn't pay much attention to you. If you bugged them too much they told you that you were nuts.

I can relate to your emotional distress....it is distressing. Sounds like they made a pretty concerted effort to find the cause.....lots of times, they don't....but do give it a try finding the cause....oh, and as mentioned, be very careful of those spinal injections....had 3....not good.

[SIZE="4"]I was diagnosed with SFN and left on my own. I have done research and found some interesting stuff. It starts in the feet and moves to the legs. If it is not stopped it then goes to the hands and the arms. I had a biopsy of the ankle and thigh as you did. I thought that was all there was to SFN. I hate the pain of the cold which I have more than the pain of the heat. It doesn't matter what the temperature is as to whether I have the cold pain. I wear gloves and sweaters in the house that has a constant temp of 72 degrees.

Today I discovered that small fiber neuropathy goes beyond the hot and cold arms, hands, legs, and feet. Fatigue, poor balance, digestive difficulties, and problems urinating are also part of it. I have been on a gluten free diet for a few years and within the last year have cheated on the diet once or twice a week. I began having a sick stomach and cramps. It didn't matter if I ate or I didn't eat - I was nauseous and crampy. My PCP asked about my diet and I admitted to cheating. He told me to stop. I did and the symptoms decreased in severity. I read an article today connecting gluten problems to SFN. I have been solely on the gluten free diet, a lactose free diet, and now a low residue diet. Things are improving but I still don't feel like eating and eat very little.

I don't know what doctor to see. I was dx by a doctor in NYC - not a convenient place to go. The local doctors seem ignorant of SFN. I am upset over the fact that my case has progressed as far as it has even though I saw a physiatrist for six years. I haven't found much in my research regarding treatment other than if caught early it can be stopped or at least slowed down. Obviously I am beyond that. Fatigue is a real problem when it hits. I overdo on good days as I'm stubborn and like to garden and live. I pay a price but it beats depression and being stuck in the house.

Balance is a problem. In two recent falls I've injured my left knee - looks like a torn miniscus with arthroscopy coming up. I've been on crutches for four years as I have foot drop and three surgeries to my right foot have left me unable to walk without them.

It seems to be rare or at least nothing neurologists bother to look for. I hope you find the right doctor for you so you can slow down the progression and find relief. I think we have to almost know more than the doctors to get them going in the right direction. I look forward to my next appt. with my PCP and the new info I will be bringing. I expect he will then take that info and find me the right doc to see. Google SFN . /SIZE]

Hi Featherme... welcome to NeuroTalk.

People who have Gluten problems, typically have as a result, some malabsorption of nutrients that goes along with that.

B12 is the most common, but zinc, magnesium, calcium and others like the B-complex may occur too.

There is also in the research new information that low Vit D levels accompany some neuropathies.

So I would get tested for these two at least, and take a good multivit with minerals like Centrum Senior.

Here is my supplement thread with further information on B12 and D:

http://neurotalk.psychcentral.com/thread121683.html
That thread is not finished yet, but I do have the B12 and D on it to start.

This is for changejobs:

Your 1 hr reading is slightly out of range. When I had my GTTs done 145 was the cut off.
This website gives interpretations of glucose tests for you to look at:
http://lightning.prohosting.com/~hyp...20Hypoglycemia

I think you should have a fasting INSULIN done as well. I think it will be elevated, and show you may have insulin resistance.
In any case I think you might be prediabetic...and the first step would be getting rid of sugar, and following a Zone type diet, or those designed for metabolic syndrome. These diets limit carbs, eliminate sugar, and encourage protein and good fats.
Watching this video about the dangers of fructose is also important:
http://www.youtube.com/watch?v=dBnniua6-oM
If you are drinking alcohol, now is the time to really cut back or quit.