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216175 tn?1226095585

Anyone here diagnosed with small fiber neuropathy?

Is there anyone here thats been diagnosed with SFN?  Besides the normal bloodwork and EMG, did you have any other tests done?  Were they painful?

Thanks, Jen
14 Responses
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1702489 tn?1307374070
I was recently diagnosed and for 2 yrs they thought i had MS. I had an EMG and QSART and both came back positive for SFN. Im still having a lot of pain and going back for another spinal tap because they still think i may have MS as well. theyve tested me for everything under the sun and so far i have a confirmed diagnosis of SFN and possible diagnosis of MS. im really nervous cuz i dont want both> Its bad enough my SFN is painful in my PNS but to have MS affecting my CNS is too much. i should hopefully get answers by the end of July. Until then i'll be a nervous wreck! All of you suffering from any kind of neuropathy, i wish you all the best in hopes that you will be pain free or hopefully find a cure...Good Luck!
Helpful - 0
Avatar universal
I was diagnosed with sfn last year. There is no cure for SFN. The pain
can be eased for burning feet or other parts that may be affected.  I
take Cymbalta, 60 mg. I can not take higher dosages, it would not
help. I have taken Lyrica, Gabapentin, and now Cymbalta. None of
them has helped me. The only thing that I found that has helped ease
the pain is high dosages of B1, B6, B12, and folic acid. I take about
8 tablets a day and the pain is not so bad.
This could help.
Helpful - 0
Avatar universal
I wanted to let others know that in addition to the facilities bowhunter mentioned, they also do the QSART test at Vanderbilt University Medical Center.  I had one in July and just found out today that in addition to POTS/Dysautonomia, I also have SFN.  I am awaiting a letter in the mail from my physician to learn further details about my specific results.  
Helpful - 0
397460 tn?1268533736
Hi again. Im back from my app with the neuro and had a few surprises. I ve  been diagnoised with IIH. Complicated damm thing but It seems my B12,B6 and folic acid levels are very low. She thinks that is contribuating to the neuropthy if not causing it! So I am starting treatment for that deficiency which she said will take till Oct to balence.
Have you had your B levels checked? My tests for neuropathy have shown up as possitve but ... maybe an easier cure? A NCS test sounds like the first part of the EMG to me. You get small eletical shocks in different patterns all over your extriemities and the measure it? I had that done and had two small burn marks after it! Not nice but I could do it again. I agree its a problem, Im for ever dropping things and cant pick them up again. the keys on the computer are difficult as well. I think Ive hit the key but not hard enought. Spend a lot of time correcting! Ask your dr about your B levels. maybe your turn for some good news! Hope all goes well  and keep me informed please.Cath278
Helpful - 0
Avatar universal
I think don't know the exact difference between a NCS and EMG.  Every time I get an EMG (both arms and legs) there are two parts to the test.  First the part with the electrical shock and then the small needles.  I'd rate both parts of the test equally unpleasant.

I have very similar symptoms to what you described and similar progression.  I've refused to take medications up to this point but it's really starting to get bothersome so I may try Lyrica pretty soon.
Helpful - 0
397460 tn?1268533736
Hi there and thank you for reply. That is good news about the EMG.After all the tests Ive had done ,I think my pain tolerance is quite high. Is the sensation similar to the NCS ? I didnt care for it but it was ok.Im allergic to local anaesthetic, which causes its own problems,but I get by.
Im just wondering about the symptoms,I have tingling,pins and needles, and burning in my feet and hands.It seems to be working its way up my extremities.I dont know that I would call it "pain" more discomfort and annoying. Im forever shaking my hands and feet to get feeling back! Have I more to look forward to? Pain is next?
Im sorry that i cant help you with your query.  I hope some one else does. if you have time ,could you answer my questions? Im seeing my neuro in the morning and want to have as much info as I can. Thanking you,cath278
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Avatar universal
I've had three EMG's and will be having a fourth in a couple weeks.  EMG's definetely are not pleasant but they are not horrible either.

I'm curious if anyone has tried the 'rebuilder' device to relieve SFN pain or even reverse SFN.
Helpful - 0
397460 tn?1268533736
Hi. Im just back from two weeks in hospital for tests.I have several problems going on but one isSensory Neuropathy. Thats in the same ballpark right? I had an,X-ray,MRI,MRI with contrast,NSC, and am going back for a EMG.Every thing was ok except the NSC. It was more uncomfortable than pain ful and lasted about 20mins. I would not like to have any  of them done again but if so I would nt be afraid this time. I am very nervous of the EMG test. Can you or someone explain it tp me and what kind of pain is involved? Hope things work out for you. Cath278
Helpful - 0
555176 tn?1224599777
I have SFN, I had the blood work done, EMG, MRI and  punch biopsy, Im going to have the QSART done as well as a spinal tap.  At the moment Im just taking meds for the pain, I also have numbness, weakness on legs, arms and face, mostly on my left side.

Good luck!
Helpful - 0
Avatar universal
I'm pretty sure that autonomic dysfunction (which can accompany small fiber neuropathies) can also cause excessive sweating as the condition is a dysfunction and if it can cause too little sweating, it can cause too much. It would be nice if one of the neurologists would comment on this.
I have been dx'd with SFN as well as the auto. dysfunction and also have excessive sweating.
Helpful - 0
280418 tn?1306325910
I have burning feet - I take Pamelor, Cymbalta and Neurontin.  The combo helps.  I am also thinking of trying the "Rebuilder".  It looks like it's too good to be true, but I'm willing to try anything.

Take care fellow burners!
Helpful - 0
186737 tn?1269884660
My doctor thinks I have small fiber neuropathy, I had an emg, but it didn't hurt for me. I am supposed to get a qsart test in the next month or so. On the qsart, that tests to see if you don't sweat, right? I doubt that I will have that turn out postive test because I sweat buckets all that time even though I am freezing all the time. I don't know what that is about, but doesn't that seem like I wouldn't have SFN since for with that you don't sweat, right? or do I have it backwards? As for pain relief, I have very little help with that aside from the nerve blocks I get from the pain doctor and the tons of pain medicine that I take, but some of the pain is so bad that no amt of medicine will stop it. Do you have any relief from the pain? is yours in your legs? mine is 70% or 80% in my legs.
Helpful - 0
Avatar universal
I was diagnosed with SFN by a QSART Test,Feb. 2008, it was not much,painful at all,much much easier than EMG's.  It is only done in 2 locations in OHIO,Cleveland&Columbus-OSU. I would be interest in any relief you, or anyone else with SFN {small fiber neuropathy} have had any success with pain relief??
Helpful - 0
Avatar universal
I have been diagnosed with small fiber neuropathy and POTs. I underwent a skin biopsy, and numerous tests for autonomic dysfunction.  None of the tests hurt like the EMG did for me!  
Helpful - 0
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