TS-HDS Antibody and Small Fiber Neuropathy

Wow! I hope you are still checking this post. I was recently diagnosed with the abnormal TS-HDS antibody test result and have realized my neuro was not kidding when he said it was rare. Info is so hard to come by and until now I had not been in contact with anyone else who had this. I would love any information, links, groups etc.
So far I have only tried one round of 1000mg a day for 5 day Solu-Medrol infusions and they made everything worse so now, 2 weeks out, I am still in bed struggling with pain, fatigue, numbness and migraines.
I am really interested in info from anyone who has tried IVIG and/or any other treatments and how they responded
Thanks

Bogibus, FYI there is a group on Facebook comprised of those who have tested positive for this same abnormal antibody diagnosis, many who have had or are awaiting IVIG therapy. You probably have to ask to join the group. Hope this helps. Helen

Thanks! Sounds like I am going to have to get back on FB!

How do they test for TS-HDS antibody ...is that a blood test

It was a blood test

Thank You very much

I am sorry one more question. I haven't been conformed with SFN yet and I going back in tomorrow for another EMG tomorrow. They were unable to get me in for a biopsy until April and because of twitching they want to test again for ALS. Does SFN show up in an EMG at all ? Does anybody else get burning in there legs as well as twitching . What about weakness. ? Thank you so much for all your help. I am just very nervous . John

@laureen8844 i do not know about it showing up on an EMG. The type i have, small fiber polyneuropathy is only diagnosable from the TS-HDS and punch biopsy. I believe that a lot of other types can be diagnosed through other tests.
I also get burning and twitching in my legs. It is like RLS but it is not all the time. Sometimes I will have it for weeks, or even months, then it may go away for even longer. At its worst, I can't sleep or even sit still. The one thing I have found to stop it is freezing my calf, literally! I know my neuro is not a big fan of it but i take ice boots (we use then to wrap ice on our horses legs) and wrap them on my calves. As soon as they get cold the twitching and pain stops. I leave ice on until my leg is totally numb. I do not know if it can do more nerve damage but i have been doing it for years and not seen any change. You can also take a gel ice pack and use an ace bandage to attach it to your leg. Might be worth a try when you can not get any relief.
Appts can be stressful for sure but at least it means you could be one step closer to an answer and even a crummy diagnosis is better then trying to deal with the unknown
...at least in my opinion.
Please let us know what you learn tomorrow and never apologize for posting questions...that's why we are all on here!
Megan

Thank You Megan. Do you get the twitches anywhere else. I am getting them in my arms and back...not often but they do occur.. John

@laureen8844 And EMG will not detect small fiber neuropathy. It detects large fiber problems, not SFN. One of the annoying issues, as too many primary care doctors are not aware of this, and will look at your EMG and tell you that you don't have neuropathy. UGH! SFN diagnosis requires the punch test or a "sweat test",