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Old 08-06-2016, 02:03 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
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8 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by mskari85 View Post
MAT - Wow, that is probably the most helpful thing I've heard yet during my months and months of trying to figure out what is happening to me. I am so sorry that I hijacked your thread here, that was not my intent, I am just so desperate to figure things out. My primary doctor, neurologist, and rheumatologist COMBINED have not been as helpful as your response once.

I truly hope you don't mind me going into a bit more detail about my situation. You're the first person I've seen here with a RA diagnosis, granted seronegative, but you still have shed so much light on this for me. I can't thank you enough.

I am seropositive RA - rheumatoid factor high, anti-ccp positive. Negative ANA, negative everything else. And I mean everything, not a single positive IgA, IgG, nothing. Vasculitis negative, ALL extractable nuclear antigen antibody tests negative, including the ones for sjorgens, etc. The only thing I have tying me to my RA diagnosis is the RF and the Anti-CCP, which are both good indicators of RA, oh and right, my horrible migrating joint pain that I've had for 3 years now.

That all said, the only other health issues I have are that I was extremely anemic for a long time (iron deficient) and I have high blood pressure - both have improved with medication and supplementation. I am also overweight, but am now down 100 pounds. The neuropathy is an absolute mystery to me AND to all of my doctors. My rheumy said she doesn't see peripheral neuropathy with RA patients. That really confused me. I'm not diabetic, but I am borderline PRE diabetic. I did take a PPI for heartburn for 3 straight years (not on it anymore since changing my diet) I can't help but wonder if my PN is stemming from poor nutrition and lack of absorbing nutrients for so long? Maybe a gluten sensitivity (tested negative for celiac)

Anyway, did NOT mean to hijack this thread from you, you're just so knowledgable and you really helped me to understand. I could not get a straight answer on how PN and RA were connected and now I'm not entirely sure they are. I wouldn't be super surprised to see a positive ANA someday, I just didn't know neuropathy would proceed that and be the first thing to go south. It's annoying to not know what is causing it because I'm just getting worse and I feel like I can't do anything about it.

Thank you again for your insight. Means a lot.
I'm delighted to have been of assistance although I'm no medic - but just a very interested person with previously unaccounted symptoms and a geekish disposition! Your RA sounds positively primary ie your main disease. So what medications are you taking for it? Have you researched whether these could cause peripheral neuropathy as a side effect? I took Sulfasalazine, methotrexate, Hydroxichloraquine and Imuran - only methotrexate did not hospitalise me with allergic reactions. All potentially can cause parasthesia - especially Hydroxichloraquine.

If you aren't on any medications that could be responsible then perhaps the active RA is paving the way for Osteoarthritis, which in turn is causing damage to your joints and affecting your nerves? I would try to see a neurologist if I were in your shoes and have investigations such as nerve conduction, brain, neck and lumbar, MRI etc. You can have RA with another non rheumatic disease of course, such as Hypothyrodism, cancer, MS, Diabetes, Parkinson's etc. But an endo told me that PN would be in longstanding diabetes only. If your RA is active and seropositive then perhaps it is causing your PN. I don't see how this could be ruled out if you still have high amounts of inflammation. There is a connective tissue involvement for many with RA after all. You will get there in the end as I have - a few years ahead of you with my symptoms and diagnosis. Nothing is black and white in rheumatology!
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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bluesfan (08-06-2016)