Rheumatoid Arthritis (RA) - Introduce yourself and meet others

I have small fiber neuropathy the only thing that blood work showed was rh factor of 146 . Does anyone have a number so great ? What's urs ?

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Hi. My name is Clare. I’m a retired RN and relocated to South Carolina from NY for a year and a half now. Initially, I was dx with lupus 34 yrs ago which then switched to intermediate Ra.

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Hi @glued2thebook, Welcome to Connect. You mentioned you were diagnosed with Lupus 34 years ago and it changed to intermediate RA. Does that mean you no longer have Lupus or just the symptoms changed to RA?

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Hi John, that’s what my nephrologist told me. I had kidney problems; bleeding, right renal artery stenosis et al so He would always check bloodwork etc. Rh level was in the 500’s. I should my rheumatologist and his response was that everyone has elevated. rh levels. So, went back to nephrology (whom I have the highest regards for) adamantly disagreed. He said RA. Switched rheumatologist and she said I d have RA. But now, he said my blood work is baffling him. In his opinion I’m transitioning to mixed connective …I’m determined that no matter what “it” is, I want my bucket list to be longer than my medical list.

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Hi, my name is Lori. I was diagnosed with juvenile rheumatoid arthritis when I was 5 years old. It started with a sprained ankle that was swollen and wouldn’t resolve and then a knee flying out and became swollen and wouldn’t resolve. After many doctors and 9 months of tests and bloodwork I was diagnosed by a wonderful pediatric rheumatologist in Memphis, TN. My childhood was filled with knee aspirations and aspirin therapy and hopes it would go away. It never did. I’ve always been seronegative and my doctor did such a good job of keeping the fluid out of my knees, I don’t have much joint damage. I’m thankful but it’s also caused me to struggle in finding a rheumatologist who believes me. During my adult years I’ve developed calcifications in my subcutaneous tissues that are scattered throughout my body and on X-ray it looks as if I’ve been shot with buckshot. I had a huge rheumatoid nodule removed from the bottom of my big toe but failed to get a copy of the medical report so that’s another thing I don’t feel any docs believe. I’ve had many tendon tears and one rupture just performing normal daily activities. I have a cutaneous vascular looking rash on my feet and legs and is now getting on my abdomen but doesn’t test positive for vasculitis or anything else although one biopsy showed fibrinogen but said nothing about collagen as we thought it might be cutaneous collagenous vasculopathy. The rash has evolved over about 15 years and looks horrible but doesn’t hurt or itch. It does get warm sometimes indicating (to me) inflammation. I also have multiple sclerosis and collagenous colitis and it’s difficult to treat all of them because the other problems don’t play well with the same medications. I feel very overwhelmed at times but keep on keeping on. I’m sorry this is so long but I’ve never been in a group before and have hopes someone will relate or have ideas about my conditions that could steer me toward a more complete, all encompassing diagnosis.

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Hi,
I am also seronegative. I love my Rheumatologist and Primary doc. They put their heads together and agreed I have RA even though I do not have that RA marker. I have had six shoulder surgeries (3R, 3L) ending in a Reverse on both; back fusion even though I have two other smashed discs inside the curve due to scoliosis; failed bunionectomy that resulted in six dislocations on my other toes so 4/5 foot surgeries; severe arthritis throughout my spine and hands, trigger finger (both thumbs); carpal tunnel/R & L; and the list goes on. Two yrs. ago, they wanted to put a rod in my back from my butt to T something. I think it was 14 discs & I refused because I have heard horror stories about those rods. I got a doctor to fix one disc outside of the curve that has grown from a couple of discs when I was ten, to an S-curve in to my middle back. I also have spinal stenosis and osteoporosis. Neuropathy in toes on both feet but bad in the top half of my R foot. Now the arch in my mouth has collapsed and jaw is wonky. I prob. won't be able to get implants or even implant-supported dentures because of the osteoporosis.
Sick of all of it and I do mean sick of all of it.

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Hi, my name is Lori. I was diagnosed with juvenile rheumatoid arthritis when I was 5 years old. It started with a sprained ankle that was swollen and wouldn’t resolve and then a knee flying out and became swollen and wouldn’t resolve. After many doctors and 9 months of tests and bloodwork I was diagnosed by a wonderful pediatric rheumatologist in Memphis, TN. My childhood was filled with knee aspirations and aspirin therapy and hopes it would go away. It never did. I’ve always been seronegative and my doctor did such a good job of keeping the fluid out of my knees, I don’t have much joint damage. I’m thankful but it’s also caused me to struggle in finding a rheumatologist who believes me. During my adult years I’ve developed calcifications in my subcutaneous tissues that are scattered throughout my body and on X-ray it looks as if I’ve been shot with buckshot. I had a huge rheumatoid nodule removed from the bottom of my big toe but failed to get a copy of the medical report so that’s another thing I don’t feel any docs believe. I’ve had many tendon tears and one rupture just performing normal daily activities. I have a cutaneous vascular looking rash on my feet and legs and is now getting on my abdomen but doesn’t test positive for vasculitis or anything else although one biopsy showed fibrinogen but said nothing about collagen as we thought it might be cutaneous collagenous vasculopathy. The rash has evolved over about 15 years and looks horrible but doesn’t hurt or itch. It does get warm sometimes indicating (to me) inflammation. I also have multiple sclerosis and collagenous colitis and it’s difficult to treat all of them because the other problems don’t play well with the same medications. I feel very overwhelmed at times but keep on keeping on. I’m sorry this is so long but I’ve never been in a group before and have hopes someone will relate or have ideas about my conditions that could steer me toward a more complete, all encompassing diagnosis.

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My issues aren’t as complicated as yours. I am seropositive for RA and have had issues misdiagnosed as chronic Lyme’s disease so, I went untreated for 15 years until the symptoms became recognizable as RA. I am following some people who have gone into remission using WFPB protocol, cutting out oil improved my pain level. Have you looked into alternative treatment for gut health and digestive issues due to food sensitivities that cannot be detected by allergy tests and other conditions traditional medicine doesn’t cover? Also, there’s prolotherapy which regards the vagus nerve. Have you tried any of these?

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