My Full Body SFN Update
 

Hi Everyone,

I haven't posted for a while but thought I would share with you the latest. I have SFN which has been confirmed by Skin Biopsy. It started with funny feelings in my feet at the end of Dec 2012 after taking an antibiotic Metronidazole. They are not sure if this caused it or not , I now have it all over my body, including my face. I have had loads of blood tests, fabry, Sodium Channel Genetic Test, all of the other anti body tests run by my Rhuemy, I've had a lip biopsy for Sjogens syndrome. Lumber punch, MRI scans. Everything has come back normal. I am in the UK and have just seen the Rhuemy today, she has said there is nothing more she can do, and has passed me back over to my Neurologist. While at her desk, she noted my Neurologist had written to me at the end of May, a letter which I never received. He advised he wants to see me to discuss trying some immune suppressant medication, the letter mentioned Steriods and IVig, which I was quite surprised about. My letter from the professor I saw in London said my biopsy was in keeping with neuro inflammation so I am guessing this is why my neuro is suggesting this option. I am hopefully going to get an appointment with him in the next few weeks, I am going to push for the IVIG, I have heard if it is inflammation then this is a good option. Quite pleased he is willing to give me other options and not just sending me on my way. I have been taking Amatriptiline and Lyrica, I have been managing quite well so far on this and managed to have a really nice holiday with my family, I am just worried if I do have accept and go for a short course of steroids this could possibly make it worse, anyway thought I would share with you how I am getting on.:)

Glad to hear your getting along reasonably well. And even happier that it sounds like you'll have some additional options to try :)

Lucky you, I am in the UK and my neuro has diagnosed SFN which I have all over incl face etc, but he said he couldn't do anything else so discharged me to my GP, I have had various meds all of which have upset my liver the latest being pregabalin, saw a Rheumy same thing all tests normal so discharged I am at a dead end in pain, including awful joint pain but no answers and little help now. I am going to try and get a second opinion from another Rheumy as I feel I have a strong possibility of having sero negative sjogrens but the Rheumy I saw doesn't believe in it 😕
I hope your treatment helps x

Hi there, I was wondering did you neuro offer any type of immune suppressant treatment? I guess mine is possibly idiopathic, or caused my Metronidazole.

good news is that they are going to be moving forward with treatment. Hopefully, ivig reverses the damage and you can heal...praying for you.