Thank you for sharing your story/situation, En Bloc. Much appreciated.
First off, I'm sorry to hear that you've been struggling with this for so long. But I'm also happy to hear that IVIG has given you some relief, and yes, any relief is of value.
I have a number of avenue that I want to discuss with my neuro and now your post makes me thing I should ask for IVIG, but also for the special MRN scan you received. What is it exactly? I take it it's not an MRI but an MRN and that the MRN can image the dorsal root ganglia? Does inflation necessarily mean damage at the cellular level? I didn't know about this test. I would like to know whether my damage is at that root level, if at all possible. I'm glad that you've experienced improvement even though yours is at that level. Another poster just yesterday I believe noted that even damaged or dead cells can regenerate or grow anew, so to speak. Do you think it's that? I don't know anything more than that passing comment at this point, but I'll look into it.
I'll speak to my neuro about the possibility of IVIG. Hopefully it's possible, especially since you note that time is of the essence. I've posted 'My Story', did so last week, and as I mention, one suspect is Sjogren's, but my ANA came back negative twice and I don't have dry eyes. I do have severe dry mouth, esp at night when sleeping, and sometimes it dries out completely, not a single drop left, and this extreme form is more recent, so several months after the feet started going. I do have itchy eyes, but they're quite wet in fact, much more so these days when exposed to the cold (so rather than a few drops in the cold, it almost looks as though I'm crying), especially if I'm speeding through on my bike. Perhaps I should post my symptoms and ask on the autoimmune forum. My neuro is trying to get me an appointment at a Sjogren's clinic, so they can take a mouth biopsy, but perhaps that's not 100% either. My only skin biopsy was of the calf area and it came back with significant fiber density reduction but no noticeable morphological changes.
I do hope I can get him to consider IVIG, though I've heard there can be some very extreme consequences/side effects too. Regardless, good for you that it has helped, and I do hope your new biopsies, if/when you get them, show improvement. I'm rooting for you.
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Originally Posted by en bloc
I have Sjogren's...and have had it for 19+ years. So sadly, my PN/SFN is due to damage at the ganglion level (ganglionopathy) from the Sjogren's and this is typically permanent/non-repairable. But my neuro/rheumy at Hopkins (only one in the country to be both a neuro AND rheumy---and his specialty is Sjogren's related neuropathy) wanted to try anyway. I was already receiving IVIG for primary immune deficiency (25% of those with autoimmune disease are also immune deficient) so we just upped the dose to appropriate level to treat neuropathy (which is triple what is received for immune def.). At first I didn't think it helped all that much, but now (over a year later at this higher dose) I can tell my autonomic symptoms are improved as well as 'some' pain...but not too much. I do have significantly increased SFN pain the last week before my next infusion, which is a clear sign that it is helping the other three weeks. I am actually able to reduce some of my cardiac meds (for autonomic dysfunction) due to receiving the IVIG. I also have improved Sjogren's symptoms (less dry mouth/eyes and less fatigue). I still have significant joint pain, but I also have psoriatic arthritis, so some probably from that.
By no means is this the perfect treatment, but it is far better than anything else I have tried (and I have tried them ALL over the last 19 years). I am more functional now and although not huge difference in pain from SFN/PN, there is a noticeable improvement...and ANY improvement is welcome. And also considering that I should have had NO improvement due to damage at the ganglion level (documented on special MRI/MRN showing enlargement of dorsal root ganglia), I am very grateful for the little improvement I receive.
I am hoping he will repeat my skin biopsy this next year to see if it shows changes in the morphology (condition) of my nerve fibers (that were previously segmented, tortuous, swollen, etc) and density. That would be proof that the IVIG is helping (other than my reported changes).
My neuro told me that Sjogren's related damage is almsot never cured/repaired UNLESS agressive treatment (like IVIG) is done within the first year of onset. This increases your changes of improvement and it decreases every year after. This is why he was surprsed I had any improvement this far out. My improvement may not be much, but it's better than nothing, which is what we expected.
Hope this helps.
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