Has anyone had it for PN or SFN for that matter? There was a thread from a while back on here that I tracked down and the fellow from NY has seen regrowth of fibers in SFN (I think). He seems to have disappeared a few years back. I'm on no RX meds and don't intend to be as long as I can avoid it, but this is something I'd consider, since it seems to not treat the symptoms but the problem itself, and to heal not mask.

I receive IVIG for PN/SFN and have had improvement. But I will warn you that IVIG is extremely expensive and typically insurance requires other treatments (steroids, anti-seizure, anti-depressants, etc) be tried first before you'll get a chance at IVIG. That being said, if you have a positive skin biopsy, documented autoimmune disease, and/or a doctor willing to go to bat for you, then you might get a trial without all the red tape.

You are correct in that it treats the root of the problem and can actually increase fiber density (and this can be confirmed with follow-up skin biopsies).

Can't hurt to try to get IVIG from the start...just don't be surprised if you have to try other treatments first.

Thank you for this information. I'll ask my neuro about this the next time I see him, and hopefully he'll be receptive. All he mentioned at our last appointment is Prednisone, if it's autoimmume, specifically Sjogren's.

If I may ask, how long have you had it and in what way has it helped? I'm wondering if it can cure or completely heal SFN, or at least give one's body a fighting chance.

I'm going to do some research on this, but if anyone has any article, studies, anything to link to regarding SFN and IVIG, I'd love to read it.

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.

Here are two papers that I got from my neuro regarding SFN and IVIG in autoimmune disorders (Sjogren and Sarcoidosis) -

Extreme efficacy of intravenous immunoglobulin therapy for severe burning pain in a patient with small fiber neuropathy associated with primary Sjögren’s syndrome
2009, Takahisa Gonoa, Eiichi Itob, Hiroyuki Noderac, Yasushi Kawaguchi*a, Hisashi Yamanakaa & Masako Haraa
http://www.tandfonline.com/doi/abs/1...165-009-0180-2

Efficacy of intravenous immunoglobulin for small fiber neuropathy associated with sarcoidosis
2011, Joseph G. Parambil a,*, Jinny O. Tavee b, Lan Zhou b, Karla S. Pearson a,Daniel A. Culver a
http://www.sciencedirect.com/science...5461111000418X

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.

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.

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 !

Lots of great, intelligent information in this thread....thanks guys! I have a question and an observation.

Bacground
My dysautonomia hit me with full force this past April....diagnosis (at a glacial pace of course) of Dorsal Root Gangliopathy because ankle and thigh SF biopsies positive. Dysautonomia specialist validates "my" diagnosis and why I think I have it:result of drug toxicity: I had many neurological symptoms from a potent antidepressant cocktail -- went into a hypertensive crisis and then abrupt withdrawal a year ago. Nothing in the literature about this.

However, dysautonomia did not set in until April. I also now have sensory neuropathy.

Question
Q: I had a lag time...could it be these events set off an incipient Sjogrens or some such autoimmune thing? I ask because I have such disabling fatigue..... "sickness behavior," basically bedbound. I have a followup with a rheumatologist, so I will (again) ask for the lip biopsy (she feels it has a lot I f false negatives....) Yet I wish to know for IVIG...

Observation: YES get eyes checked. Went last week to ophthalmologist for dry eye and found I have nerve damage - slight at this time. Threw me.

Thanks!