[mskari85]

Hi all -

I was diagnosed with seropositive RA in the beginning of July after 3 years of joint pain. ANA was negative at that time. All Sjogrens, Scleroderma, and Lupus tests negative (other than the ANA, which now just turned positive, of course) ANA is 1:320 homogenous pattern. Also, had a brain MRI - no MS lesions. Rheumy is telling me the positive ANA is from the RA, meanwhile my SFN rages on and has taken over most of my body. I am on MTX for the RA which has calmed the RA down significantly. I am also on LDN (low-dose naltrexone) for my RA and was hoping it would help the neuropathy, but no dice. It does seem to help the RA, however. In fact, nothing that minimizes inflammation has helped my neuropathy (prednisone, for example)

So, okay, doctor tells me that my SFN has to be autoimmune mediated, but has no idea what is causing it. I'm starting to believe it's just some separate autoimmune malfunction where my immune system is attacking my nerves. No Sjogrens symptoms. No Lupus symptoms, other than joint pain, which is the RA. No vasculitis. Just the RA markers, elevated inflammatory markers, and the positive ANA. Also had a positive gluten antibody blood test, but negative for celiac.

I just have no idea where to go from here. I assume at some point, some blood marker will shift for another AI disease that will explain the SFN, but in the mean time, I just sit and wait for that? And worsen? And if this really is an autoimmunity neuropathy, which I suspect it is, then what can really be done? Sometimes I wonder about CIDP, but I have zero weakness. It is all purely sensory.

My new doctor that prescribed me LDN wants to test for lyme through Igenex and for other co-infections and he wants me to start antibiotic therapy for connective tissue disease. Any thoughts on this?

Any ideas or input would be fantastic. I saw a new neurologist who wants to send me to Mayo (which is an hour and a half away from me) and I'm willing to go, but I feel like they're just going to diagnose me with SFN and send me on my way with some gabapentin or something. Ugh.

[glenntaj]

--seems to be a good idea, if there is any possibility of tick-borne disease.

What serological serum marker for gluten came up positive? And, if you are "negative" for celiac, was that negative for serological testing of by dint of small intestinal biopsy (the gold standard for diagnosing celiac)? I ask as there are up to 20% of celiacs negative on serological markers who are found to have intestinal damage consistent with celiac on biopsy, AND too many gastroenterologists, when doing the biopsy, do not take enough samples from enough places to effectively rule celiac out or in (this is quite the topic of discussion among the gastroenterological newsletters/journals).

[Healthgirl]

Originally Posted by mskari85

Hi all -

I was diagnosed with seropositive RA in the beginning of July after 3 years of joint pain. ANA was negative at that time. All Sjogrens, Scleroderma, and Lupus tests negative (other than the ANA, which now just turned positive, of course) ANA is 1:320 homogenous pattern. Also, had a brain MRI - no MS lesions. Rheumy is telling me the positive ANA is from the RA, meanwhile my SFN rages on and has taken over most of my body. I am on MTX for the RA which has calmed the RA down significantly. I am also on LDN (low-dose naltrexone) for my RA and was hoping it would help the neuropathy, but no dice. It does seem to help the RA, however. In fact, nothing that minimizes inflammation has helped my neuropathy (prednisone, for example)

So, okay, doctor tells me that my SFN has to be autoimmune mediated, but has no idea what is causing it. I'm starting to believe it's just some separate autoimmune malfunction where my immune system is attacking my nerves. No Sjogrens symptoms. No Lupus symptoms, other than joint pain, which is the RA. No vasculitis. Just the RA markers, elevated inflammatory markers, and the positive ANA. Also had a positive gluten antibody blood test, but negative for celiac.

I just have no idea where to go from here. I assume at some point, some blood marker will shift for another AI disease that will explain the SFN, but in the mean time, I just sit and wait for that? And worsen? And if this really is an autoimmunity neuropathy, which I suspect it is, then what can really be done? Sometimes I wonder about CIDP, but I have zero weakness. It is all purely sensory.

My new doctor that prescribed me LDN wants to test for lyme through Igenex and for other co-infections and he wants me to start antibiotic therapy for connective tissue disease. Any thoughts on this?

Any ideas or input would be fantastic. I saw a new neurologist who wants to send me to Mayo (which is an hour and a half away from me) and I'm willing to go, but I feel like they're just going to diagnose me with SFN and send me on my way with some gabapentin or something. Ugh.

Is the doctor proposing the antibiotics a functional doctor? Which one is being suggested. Does he/she think you have a bacterial infection?

Also, have you tried plaquenil?

[mskari85]

Originally Posted by glenntaj

--seems to be a good idea, if there is any possibility of tick-borne disease.

What serological serum marker for gluten came up positive? And, if you are "negative" for celiac, was that negative for serological testing of by dint of small intestinal biopsy (the gold standard for diagnosing celiac)? I ask as there are up to 20% of celiacs negative on serological markers who are found to have intestinal damage consistent with celiac on biopsy, AND too many gastroenterologists, when doing the biopsy, do not take enough samples from enough places to effectively rule celiac out or in (this is quite the topic of discussion among the gastroenterological newsletters/journals).

Hi Glenntaj, thanks for replying! The marker that came up positive was the anti-gliadin IgA marker. IgG was negative, as was IgE. Truthfully, from all the reading I've done, I can't conclusively figure out if a positive IgA means anything at all. My primary says no, my new doctor who is more functional instead of conventional says yes. I've been cutting out gluten, but I keep finding it in crap that I eat, so it's been a process.

The actual blood test for celiac, transglutaminase, came back negative. No biopsy has been done. My primary did refer me to a GI specialist, still waiting for that appointment.

Do you know the significance of a positive anti-gliadin IgA, if there is one? Could it be as simple as gluten causing my neuropathy? I just don't get it.

[mskari85]

Originally Posted by Healthgirl

Is the doctor proposing the antibiotics a functional doctor? Which one is being suggested. Does he/she think you have a bacterial infection?

Also, have you tried plaquenil?

The doctor is not functional, he's an MD but he has training in functional medicine. He was colleagues with Terry Wahls, of the Wahls' Protocol, and he is all about diet. The antibiotic therapy he wants to do is found at roadback.org - a less conventional approach to treating rheumatic disease. He also put me on a paleo diet. I was on a ketogenic diet, but was eating dairy, so now he has me off of dairy too. It hasn't been enough time to really tell what good it's doing but my RA is being quiet and the neuropathy is raging on.

I haven't tried plaquenil. I've looked at it a few times and wondered about asking my rheumy if I can try it - she doesn't believe my neuropathy is stemming from an autoimmune process (uh, yeah, it is) but until I have some kind of blood marker for an AI disease that causes SFN, I'm pretty much screwed with her.

[glenntaj]

--would indicate that your body is forming antibodies to gluten.

Of the usual celiac tests, the anti-gliadin is the most sensitive but least specific, generally; the anti-transglutaminase IgA is the test that is most often correlated with the villious damage of frank celiac, but not always.

There has been some research evidence, most specifically from European doctor Hadijvassiliou, that people with isolated anti-gliadin positives may show neurologic symptoms of gluten sensitivity well before they show any gastrointestinal symptoms, and they may even have a different genetic background than more classic celiacs. And, there has been some more recent research evidence that "non-celiac gluten sensitivity" is an actual thing, with distinctive immune markers:

http://gut.bmj.com/content/early/201...16-311964.full

It may be worth investigating further, as celiac is a known cause of neuropathy and other neurologic complications.

[madisongrrl]

Originally Posted by mskari85

Hi all -

So, okay, doctor tells me that my SFN has to be autoimmune mediated, but has no idea what is causing it........Just the RA markers, elevated inflammatory markers, and the positive ANA.

So how was your RA diagnosed? By Rh factor or anti-CCP?

Originally Posted by mskari85

My new doctor that prescribed me LDN wants to test for lyme through Igenex and for other co-infections and he wants me to start antibiotic therapy for connective tissue disease. Any thoughts on this?

If you live in an endemic area for Lyme, then the Igenex test might be a good idea, if you can swing the cost of the test.

Your functional medicine doc is a bright one. One of the suspected causes of RA is bacterial. You could probably go down that worm hole on pubmed.

Rheumatoid arthritis is caused by a Proteus urinary tract infection. - PubMed - NCBI

In addition to the LDN, I know Paleo diets can be helpful for some people (especially if gluten is a suspect) and vegetarian diets are helpful for others. I've read that vegetarian diets reduce the Proteus mirabilis bacteria. So trying an antibiotic might help with the RA.

At the beginning of my illness, I thought I had RA, but then the burning started....and the end result is I have a few types of nerve damage due to Lyme.

Originally Posted by mskari85

Any ideas or input would be fantastic. I saw a new neurologist who wants to send me to Mayo (which is an hour and a half away from me) and I'm willing to go, but I feel like they're just going to diagnose me with SFN and send me on my way with some gabapentin or something. Ugh.

You can go back in the archives on this message board, and you won't see great reviews for Mayo with people who have SFN. I know there is at least one person on this message board who has CIPD and found Mayo to be excellent at making a diagnosis for that condition.

[MAT52]

Originally Posted by mskari85

Hi Glenntaj, thanks for replying! The marker that came up positive was the anti-gliadin IgA marker. IgG was negative, as was IgE. Truthfully, from all the reading I've done, I can't conclusively figure out if a positive IgA means anything at all. My primary says no, my new doctor who is more functional instead of conventional says yes. I've been cutting out gluten, but I keep finding it in crap that I eat, so it's been a process.

The actual blood test for celiac, transglutaminase, came back negative. No biopsy has been done. My primary did refer me to a GI specialist, still waiting for that appointment.

Do you know the significance of a positive anti-gliadin IgA, if there is one? Could it be as simple as gluten causing my neuropathy? I just don't get it.

Sorry I'm at work so haven't time to read entire thread but our stories are very similar so I thought I'd reply quickly. I have had same dilemma only my RA was seronegative and non erosive and went away after a few years on MTX and Hydrocochloraquine. The SFN continued to rage however but all immunology was negative following 3 years in dmards and still on low dose steroids.

Finally my ANA swung positive three months ago - same number as yours but nucleolar pattern pointing more to Scleroderma - as do some of my symptoms. My new rheum organised for me to have US of parotids and lip biopsy. US was negative for inflamed parotids but lip biopsy came up strongly positive for Sjogrens. It doesn't matter if you have primary or secondary SS - it can and often does cause SFN and doesn't always present as dry eyes or mouth first. Worth a thought? I've just posted my symptom list and questions for neurologist - who is a bit of an Antiller the Hun so I need armour plating for her! If you read my list and recognise symptoms then perhaps you might consider getting lip biopsy done to rule Sjogrens in or out properly? It worked for me at any rate.

Ps my IgA is always raised and I think this goes with high inflammation/ proteins. Last time checked my IgG was also raised, as was compliment - and it was this that made my new rheumy think I might have Sjogrens as my primary disease and cause of SFN.