En Bloc,

Thank you for all this information, your thoughts, and just your willingness to help guide me here. It's very much appreciated.

I will speak to my neuro about the MRN, which I've thoroughly researched now. I'm more concerned about treatment, so the IVIG, if it comes to that, but I do like to know what's going on and what level my damage is at. You see, I'm in Canada, so I'm not sure how common the MRN is. Socialized medicine has immense benefits, but it can also be slower and not at the very edge of new advances, especially if the government doesn't fund it sufficiently, as was the case with our last one. But for now I also have US insurance, because I work in the US, so perhaps I can use that avenue. It definitely appears that you found your MRN helpful. And I'm glad to hear what you say, namely, that your improvement seems to signal that damage even at the DRG level can be healed. I wish the best for you and am now keen to hear what your future biopsy shows. Mine showed significant density reduction but no morphological changes. That has to be good, no?

The information regarding Sjogren's is very useful. I'll speak to my neuro. I have an appointment at a leading research clinic for Sjogren's here, though it might not be for months - neuro just sent the referral. So I'll definitely have a lip biopsy done. Not sure if the further SSA and SSB antibody tests are necessary then, no? But I haven't ruled it out, especially now that I know so many test negative for the antibodies. I didn't know that, wow! I do have a lot of the symptoms, but I also have lots of other symptoms. Clearly there is something happening with my immune system, what label we put it may only be important in some cases and especially those that allow for IVIG under the system here in Canada. Some neuropathies allow for it.

For now, my case isn't as extreme perhaps. Then again, it sort of is, as it's all over with autonomic dysfunction. Diet and lifestyle changes have helped greatly.

One thing I will do, based on your helpful suggestion, is ask my GP to refer me to an ophthalmologist to check my eyes. It may takes months to see one, it often does, but I'll try to pull some string, and get one in January, if at all possible. My eyes are very important in what I do - I spend hours a day reading and writing, and can't afford any dysfunction, but that may not be up to me. My eyes have been acting strangely of late though, so you're right, I should get them checked out.

I will say that due to the slow pace of things here, I've been considering heading to Phoenix (apparently there's a SFN clinic there) or Mayo or perhaps Hopkins and getting lots of tests done in a few days and trying to figure out the cause at least, which is most important right now. I'm still sitting on this, partly because I want to speak with my neuro about it first, though he did suggest it in passing at our last appointment, but also partly because it's not cheap, and my insurance doesn't cover 100%, more like 70-80.

Anyway, I've noted all you've written here. Thank you. I may have some more questions, given how knowledgeable you are. I appreciate this. And please let us know how it goes with you. I am hoping you do well on the IVIG, or keep doing well. It seems like the best possible thing. Well, do they even do stem cell for SFN, or is it not done for any condition for now? I can't recall if it's only being studied in vitro. Now I'm just thinking aloud.

Thanks again!

It is possible to get a Sjogren Syndrome diagnosis with a negative lip biopsy and a positive SSA/SSB/ANA, so these tests are important.
The risk for neurological disorders (such as neuropathy and trigeminal neuralgia) and Lymphoma, is much much higher when having Sjogren. So a Sjogren diagnosis might help you with the diagnosis and treatment of the other problems.

I had severe dryness and joint pain but negative antibodies and nonspecific inflammation in lip biopsy so didn't get this diagnosis. But... I had many of the problems that are much more frequent in Sjogren - Adie tonic pupil, trigeminal neuralgia, Lymphoma, POTS, and SFN.

Although I don't have any specific autoimmune diagnosis my neuro recommended on IVIG/Rituximab because it is more likely that I have something like Sjogren, then having all the above complications of Sjogren without an immunological cause.

Good luck getting a relatively quick appointments !

StillHoping, thanks again for keeping the conversation going, and for all this helpful back and forth. I didn't know that a negative lip biopsy can still mean Sjogren's. I'll see about the other two antibody tests, as I've already tested negative for the ANA twice. I think I may have some degree of TN, but it's very minor, for now at any rate. I'll let you know when I have the biopsy done and the other blood work, but it may not be for some time, if I stick around in Canada.

It seems that you're still looking too. I really hope we get more answers soon. I'm also curious to see what improvement you have on your new treatment, if you go ahead with it.