Rheumatoid Arthritis (RA) - Introduce yourself and meet others

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.

Oh my…..I’m so sorry you’ve had to suffer so much. I have had lumbar surgery due to degeneration and disc loss . I have a wonderful surgeon who performed a Transforaminal
lumbar interbody fusion L5-S1. So, I have two rods and 4 screws in my lumbar back. He said when he removed what was left of the disc he was surprised to see it was all gone except for a small amount on either side. The same surgeon recently performed surgery on my cervical spine and the procedure was ANTERIOR CERVICAL
Name
DISCECTOMY WITH FUSION.
C4-5 AND C5-6, USING
ANTERIOR PLATE AND
SCREWS THAT WERE
SEPARATE FROM THE
INTERBODY GRAFTS.
POSTERIOR
DECOMPRESSIVE
LAMINECTOMY OF C4, C5, C6
AND PARTIAL C7. I’m lucky to have found him as my surgeries have gone remarkably well and I have benefited from both of them. I have considered trying to see someone at Mayo Clinic or Cleveland Clinic but have not taken the steps to try to get an appointment yet. Everything seems so overwhelming and to embark on a long trip in unknown territory is something I’ve been putting off but I may have to do so in the near future.

Thank you so much for your response. No, I have not tried any of the therapies/food modifications you mentioned but will check them out. So glad you finally got your diagnosis and am hoping you’ve found some relief.

I can attest to the differences it has made for me. I’m following WFPB low-fat, no oil or sugar. Its not an overnight change. I have fallen back on my ways and when I do the flare ups return. I’m doing this in conjunction with taking Enbrel. There’s too much information for me to list it all here. If interested, check out youtube for Paddison Program and for WFPB information Chef AJ

I can attest to the differences it has made for me. I’m following WFPB low-fat, no oil or sugar. Its not an overnight change. I have fallen back on my ways and when I do the flare ups return. I’m doing this in conjunction with taking Enbrel. There’s too much information for me to list it all here. If interested, check out youtube for Paddison Program and for WFPB information Chef AJ

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.

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?

Welcome Lori @lemartin417, You certainly have a lot on your plate and have been dealing with it for a long long time. I'm hoping some member with similar symptoms or experience may be able to share some thoughts or suggestions with you.

I was not familiar with the rare condition so had to look it up and found this reference that talks about it - Cutaneous Collagenous Vasculopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4689498/.

I have a similar looking discoloration vs rash on my legs that my doctors just said it's related to edema. I do have lymphedema as one of my conditions and have to wear compression socks to help. It sounds like you have seen many doctors and specialists over the years. Have you ever been to a teaching hospital or major health facility like Mayo Clinic to see if they might have some insight to a more complete diagnosis?

Thank you John, for the link. I’ve read what I can find online about CCV but his was new for me. Any information is much appreciated. For now my diagnosis is general essential teleangiectasia. I have added a photo of my left leg. I have considered going to a teaching hospital and am thinking I need to take steps to get that started.