Mat52,

I just wanted to add again that I'm sorry for your woes and appreciate you sharing your story. But also, regarding mast cells activation syndrome, that I posted this a short while ago, which you may or may not have seen: http://neurotalk.psychcentral.com/thread233192.html. The article is useful. And I myself have begun using quercetin. It may be too soon to say, but it may be that my allergic reaction or food sensitivities have minimized even in the last week. But I can't be sure, and apparently it may take a few weeks and in some cases months. It may be worth giving it a try, if you think that mast cell mediators are at issue for you.

new to this board
 

Hi David,
I briefly read thru some of your posts about your inability to get a diagnosis. I have autoimmune autonomic neuropathy, and it took me several years of seeing doctors until I found someone who knew what tests to run. I also take supplements to help my nerves heal. I am happy to share some of my experiences with you. As you probably know by now, there are very few doctors that know about or are interested in autoimmune autonomic neuropathy. Have you looked at the list of doctors on *edit* Look under "connect" to find a doctor, it might give you a place to start. I don't know what part of the world you are in, but this website lists doctors from all around the world. For example, my doctor ran a dysautonomia panel by sending my serum to Mayo: look up "Mayo dysautonomia panel" to see the long list of antibodies that can cause this. I tested positive for GAD65 antibodies. Suddenly my other doctors realized I didn't have "anxiety" causing my symptoms. I started treatment and I have been improving. But it is still a long haul. It is very important to be diagnosed because things worsen and spread. I wish you luck, please lmk if I can help, since it sounds like you may be on the same path as I am.
JJ

Thanks for your post, JJ. The link was edited out, so I can't see it. Feel free to send if to me via a PM, if that's possible. I'm early on in the process, with a good neurologist and only recently saw the rheumatologist as you can see. I'll know the test results next week.

Were you ever diagnosed with a specific autoimmune disorder? The problem is that if one isn't, then it's just a general category of idiopathic. I'm not sure if a physician, or many, are willing to diagnose one with autoimmune idiopathic unless they can pin down a specific autoimmune disorder. I have both sensory and autonomic issues, so small fiber polyneuropathy.

I'll look into that panel and see what my neuro thinks, when I see him again. Thanks.

I suppose I'm curious whether you were diagnose with anything specific, and if so, what treatment you're receiving exactly, IVIG, steroids, etc. So far, I've gone all natural.

Thanks David - I missed this thread and also not sure about trying any more meds without the thumbs up from my rheumatologist or neurologist because of all my allergies. Like you I'm quite sure I have an immune mediated polyneuropathy. I strongly suspect mine is a rare type of Sjogrens because of the previous non-erosive RA history.

But as you know getting anyone to diagnose and treat it with negative or equivocal autoantibodies, is another thing entirely. I'm not sure where you live? I've read JJ's comments with great interest and agree it's not something to leave because mine is advancing quite badly now and the autonomic issues are quite scary. I'm going to be starting off with a neurology doctor (not yet a consultant neurologist) at the Ninewells Hospital in Dundee, Scotland soon and also switching to rheumatology there but not too hopeful really now even though it's one of the largest teaching hospitals in Europe. The dizziness is rapidly worsening so I'll read your thread about Mast Cells etc with great interest - as I have this thread too. Thanks for your suggestions and good luck to both of us eh:hug:! Mat

Ps I've just read up about quercetin and realise now that it's not a medicine - it's a component found in apples and other fruit and veg. I'm already pretty wholesome in my eating habits but haven't gone fully Paleo yet - mainly because we are moving around all the time presently and it's hard to follow a new diet with restrictions under these circumstances. But I have been wheat free for five years, eat a lot of fruit and veg especially apples and I don't think Paleo would be a huge shift for me. They say now that the Mediterranean diet is the most helpful one for RA sufferers - maybe this is why my RA has disappeared? However I have friends who have been on a Paleo diet for years and are still very sick with autoimmune arthritis so although diet helps I'm not sure it's at the heart of my own problems. Keeping an open mind though and this was an interesting read - many thanks!

Mat, first off, here's the link to the article about quercetin with lots of links to studies. Quercetin is in apples and lots of other things, but in very low concentrations. You'd have to eat a lot of apples to get there. :) I take 500 mg each morning with breakfast, and have been for a week or two now. I can't tell if it's helping now, but it seems like it is.

The paleo diet, or a more ketogenic form, has been very helpful to me, but sometimes, perhaps often, there are exceptions, and one has to find what works best. There are some general rules that seem to apply to pretty much everyone, like sugar is bad, gluten is harmful, and so on and so forth. But the Mediterranean diet is pretty healthy, I think, as long it it's not too heavy on the starches, which it can be at times. But fish, olive oil, lots of vegetables, and perhaps even some legumes (not permitted really on the paleo diet) can all be very healthy. In my case, carbs and sugars, even fructose, are problematic, but I know that mine situation is gut mediated, so I'm not surprised.

Again, sorry to hear about your woes with the medical profession. I'm involved in my own struggle, but I have some good physicians here, so hopefully I'll get some answers. I'm young now, so I just worry about further degeneration as I age. One reason it's so difficult is that one doesn't know what to expect with this, especially since I don't know what is causing it. If it is my gut, and I can fix that, which I'm trying to do now, then I may be able to fix what has happened and if I'm at the autoimmune phase/it has already been triggered, then perhaps I have put it into remission, whatever particular disorder it is.

Good luck!

Autoimmune autonomic neuropathy
 

Hi David,
**

Anyway, if you can get tested for autonomic dysfunction, like a tilt table test for POTS, (if you are dizzy and have fast heart rate and low blood pressure) and there are lots of other tests, then autonomic neuropathy is a diagnosis. Autonomic and sensory neuropathy go together, I have both too. If you test positive for any one of the many antibodies that can cause it, like on the Mayo panel I referenced, then that is proof of an autoimmune cause of the neuropathy. Other blood tests, like sed rate, fibrinogen, and Factor 8 levels also can indicate there is inflammation. There are many treatments for autoimmune neuropathy disorders. I have been on meds, plasmapheresis, and IVIg. Rituxan infusions seem to be in favor right now, according to the autonomic neurologist I recently saw. You need high doses for, like, a year. I am supposed to start that treatment soon. The meds I have been on have helped me but not enough to stop it from continuing. My doctor said that as long as I still have any neuropathy, it is worth treating. Believe me, I took many many supplements to help quiet my immune system, and improve my leaky gut, etc, and they are not nearly as powerful as the meds. It can be a two-edged sword, because there are risks and side effects. But for me, the GAD65 antibodies I have can also cause other problems, like encephalitis. So getting their levels reduced is a priority for me that I couldn't do with the many supplements I tried. I am on 5 other meds to control the autonomic symptoms, to raise my blood pressure, slow my heart rate, and help bladder and bowel problems. Without them I am in bed all day. I also thought for a long time I had Sjogren's--I have SSA antibodies, but the GAD65 antibodies are more often associated with the autonomic problems, and autonomic problems can cause sicca symptoms. Look *admin edit* for a university affiliated neurologist who specializes in autonomic neuropathy. They are most likely to be able to find out what is going on with you. I have been to many neurologists, and finally the autonomic specialists were much more in tune with my condition. And I went EVERYWHERE!!!! If you are interested in supplements, look up Nutrinerve. It is a combination of supplements that have been shown to help nerves heal. I saw Dr. Vinik, who developed the supplement, he was excellent, but no longer has an autonomic neuropathy lab for testing.
JJ

Thanks, JJ.

I’ve already been diagnosed with SFN via a skin biopsy and we know that I have autonomic dysfunction, so testing won’t do much. My neuro just went on the basis of the biopsy and my symptoms. The suspicion is that it’s autoimmune, but we’re not sure. There are no markers yet, but I can perhaps have some further testing done. The thing is that even if I have a given marker or two, indicating possible autoimmune and/or inflammation, it still won’t be as useful as a diagnosis of a specific condition. SFN and autonomic dysfunction are symptoms. Physicians where I am are less likely, perhaps entirely unlikely, to treat with just some generalized autoimmune and/or inflammatory markers. But I’m leaning more and more toward heading to the US and getting tested at some major center.

As for treatment, I would need a specific diagnosis to have it done here, but perhaps some markers would help. At this point, things have no gotten much worse, and there has been some improvement, all thanks to a complex of supplements and a specific paleo ketogenic diet. My situation is almost certainly gut mediated, so before taking any serious pharma treatments, given the improvement I’ve seen naturally so far, I am working on healing my gut. I will see what comes of it. But I’m still pursuing a diagnoses of the cause of my SFN, which is both sensory and autonomic.

I wish you good luck with the new treatment, and appreciate the information about the testing at Mayo. I’ll print that and show it to my neuro when I next see him. Perhaps some day I’ll need some pharma treatment, but so far things have not escalated to that degree. But I do want to see if I have a known condition causing it.

David

I just wanted to post an update. I heard back from the rheumatologist and unfortunately the tests revealed nothing. There was no sign of autoimmunity or inflammation.

At this point I haven't decided how to proceed. What I'm thinking is that I should see my neurologist first and see what he thinks. He is still planning on sending out a sample for DNA sequencing for TTR familial Amyloidosis. But I don't believe much will come of that. As I've said before, if I have amyloidosis, it's almost certainly acquired not inherited.

I could push to see another rheumatologist, actually very easily via my GP if not my neuro. I could push to have a lip biopsy done, even though I have no other evidence of Sjogren's. I could push for this, even though I don't like how invasive it is, because despite not having an objective signs, so as far as testing goes, I do have pretty much all the symptoms. Now, here's a question for anyone who can answer it, and here I'm thinking of En Bloc and Glenn in particular. Is the rheumatologist correct that all the Sjogren's symptoms I'm experiencing, the dry mouth, the itchy eyes (also the feeling that there's something in my eye when there isn't), difficulty swallowing, cracked tongue, dry throat, dry lips that also peel and more can be the cause of autonomic dysfunction?
This was what he suggested when I asked him why I have all these symptoms, if I don't have Sjogren's.

Usually I don't care very much for a diagnosis that only results in a need to take powerful and dangerous pharmaceuticals, but with Sjogren's it can be a dangerous disease, so at minimum I would need observation. I would also like to know if my clearly gut mediated condition has actually led to not just generalized inflammation and toxicity or infection, but actual autoimmunity.

However, even if I do have the lip biopsy and it is positive, what I came to understand in speaking with the famous rheumatologist I saw is that it would not be sufficient for a diagnosis, that it is not the gold standard and that I would need more evidence. I'm not sure if that's the case, but he did emphasize that there's no gold standard for Sjogren's.

Also, En Bloc, if you think I should post this elsewhere too, perhaps on a Sjogren's forum say on this site, please let me know.

Thanks in advance to anyone who knows about all this and can offer some advice.

He might be right. The dryness could be caused by inflammation in the glands (as the salive and lacrimal glands) or in the autonomic nerves (mainly parasympathetic) that innervates these glands.