Thread: IVIG treatment
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Old 12-20-2015, 11:57 PM
DavidHC DavidHC is offline
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Join Date: Nov 2015
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DavidHC DavidHC is offline
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Join Date: Nov 2015
Posts: 732
8 yr Member
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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!






Quote:
Originally Posted by en bloc View Post
David,

The MRI I had is probably best called an MRN. It was (and may still be) experimental at the time done (a good 5 years ago) as an MRI with a special DRG (dorsal root ganglia) Protocol...to look directly at the DRG. This was at Hopkins, through their neuro dept. I don't know if anyone else offers this special DRG protocol now (it was not offered anywhere else at the time mine was done). The enlargement also generate increase signal, so they concluded it was a sign of inflammation and damage of the ganglia. I do think there has to be 'some' means of regeneration of cells for me to experience even mild improvement.

As for your ANA being negative: My ANA, as well as SSA & SSB (Sjogren's antibody tests) are ALL negative and have been for 19 years. I am sero-negative for sjogren's...as are up to 40% of Sjogren's patients! Although my lip biopsy was clearly positive showing complete destruction of the acinar structures and replaced with scar tissue. The degree of damage and fibrosis was listed as typical of Sjogren's at end stage. So, that being said, don't discount the Sjogren's until you've had a lip biopsy and other antibody testing. And make sure your lip biopsy is read by a qualified pathologist with experience in Sjogren's Dx...and make sure they use a proper scale, like Greenspan.

Is it possible for you to travel to Hopkins? They have an excellent Sjogren's Center and of course I mentioned earlier about my neuro/rheumy who specializes in neuro manifestation of rheumatic disease (specifically focused on sjogren's). His name is Julius Birnbaum and you can find many of his articles, bio, etc online. If possible, it would be well worth your effort to try and see him.

And one more note: Dry eyes often water more frequently than normal eyes...due to inflammation. You should have your eyes checked by an ophthalmologist and a few tests done (schirmer's, Rose bengal, slit lamp etc). You may have more damage to your eyes than your realize. Just a thought.
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