Update - Full body neuropathy - Varient of Guillian Barre?
 

Hi

I haven't been on for a while but thought i would update you on my neuropathy journey. I have today seen my neuro. My neuro reminded me how rare my presentation was, being NLD and also with increased nerve fibers rather than decreased.

I have been offered IVIG as a trial (being in the UK on NHS is very difficult to obtain).

As i have mentioned before, when i first saw him in 2013 i didn't have any pain , just strange feelings all over my body. When he suggested SFN i was in shock and scared myself to death with searching the net. I then experienced a sudden onset of bodywide pain. After a few months this gradually subsided. I have had pain on and off which has been related to stress, but most of the time i feel nearly symptom free.

I asked my neuro if he thought this could be autoimmune, he said he can't prove it, but he thinks that i could have had a virus and which triggered variant of Guillian Barre Syndrome which only effects the small nerves.

Its difficult to know what for sure has caused it, but this neuro is pretty spot on, he has seen alot of SFN cases from working at the main hospital in London. He has also seen patients with increased fibres such as myself which is very unusual. He has put the IVIG trial on hold.

I do still get strange symptoms and flare ups, i wonder if this will be like this for the rest of my life. I wonder if it is getting better or gone away. Just wish i knew what had caused it in the first place.:confused:

Hi LouLou

Sorry to hear you are having to deal with SFN but equally glad to hear you are getting what sounds like some good treatment from a responsive neuro.

Your post jogged my memory of an article I read recently specifically about a type of SFN being a a variant of GB.
Here's the link:

http://jnnp.bmj.com/content/72/4/540.full
"Acute small fibre sensory neuropathy: another variant of Guillain-Barré syndrome?"

Although the article is dated 2001 it has a lot of info that you may find useful.

All the best for your IVIG trial. Let us know how you get on.

Thank you Bluesfan

Hi loulou
My name is Nicolas, I am a 26 French guy. I have created an account here so that I can talk to you cause your case is what I have seen the most similar to mine.
In 2014 I went at the ER for suspicion of GB. It wasn't Then I had two years with mixed times : sometimes painful, sometimes not. Mostly mild.
But a month ago it went crazy and all my body started hurting bad. Much much worse that it ever was. I was really symptom free one month ago. How crazy?
I would really like to get into contact with you and know more about your story.
Thanks and all the best

Yes--
 

--there is an uncommon variant known as acute onset small fiber neuropathy, that is sometimes thought to be a small fiber variant of Guillain Barre, or a Guillian Barre "like" syndrome:

GBS

Pain Differential Diagnosis

Acute small fibre sensory neuropathy: another variant of Guillain-Barre syndrome? -- Seneviratne and Gunasekera 72 (4): 54
-- Journal of Neurology, Neurosurgery & Psychiatry

Hi there. Happy to talk about my story. They do not think it was gbs now. They believe it is inflammation which seems to fluctuate. I feel o.k about 80% of the time but having another flare this evening. Have you had the skin biopsy yet?

Thanks for answering loulou :-). I did not. Actually I have been seeing a neuro during one year after the onset of my symptoms. He didn't tell me anything. I then suspected SFN by looking on the Internet. But I did not look further as it was just like you feeling well 80% of the time. But my last flare led my to take a new appointment with a good SFN specialist. One month from today. I guess he will ask for the skin biopsy.
Like you is seems to come and go... You're lucky to have found a good neuro. Mine was average and it was like if it was not written in his neuro book, then it didn't exist. I told him about possible sensory only GBS and it told me that It didn't exist. Crazy lack of curiosity. I thought doctors wanted to be doctors so that they can help people and dig deep if necessary... Well... Not everyone
Do you have any meds?

Hi there I take amatryptoline not sure how you spell! Also lyrica. When I was going through my very painful phase both of these drugs helped .I still take them but pain comes and goes. Comes on more with stress. It is fluctuating inflammation. If I feel I am progressing will try the trial of ivig but for the moment I manage well on the pain meds. Good luck and keep us informed.