Arthritis For both Osteo and Rheumatoid arthritis.


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Old 01-31-2014, 12:53 AM #1
mcmars mcmars is offline
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Join Date: Jan 2014
Posts: 10
10 yr Member
mcmars mcmars is offline
Junior Member
 
Join Date: Jan 2014
Posts: 10
10 yr Member
Book New here, but no stranger to RA, OA and other AI neuro problems

I just signed on here due to recent head injuries and post concussion issues. But my main health are centered around RA,OA, Hashimotos, nerve damage from Autoimmune processes, DDD in spine, etc. I did an intro in the new member section, but thought I would let others know in the RA section that I have joined on as the RA seems to be the primary disease process for my complicated health situation. I would love to hear from others how may be able to share some insight and trade experiences about what is going on and what works.

Regarding RA, I have probably had it active since early 20's, but not DX till Nov of 2004. Had RF and anti-ccp positive upon DX in 04, along w erosions in hand/feet and RA nodules including lung nodules. However, the usual inflammatory blood markers have always been normal. This fooled the first couple of Rheumy docs who were not very bright, (treat the patient, not the blood work, remember docs, I think they teach that in med school). However, my GP doc sent me to Mayo clinic for 3 weeks of work as I presented w so much complicated stuff and when I asked mayo rheumy why inflammatory markers were normal, he calmly says, " In your case, I see your high platelet count as your personal inflammatory indicator". Wow, personalized patient centered medicine, but we look so much alike, you mean we are all different somehow, lol. Excuse my sarcasim, but so many docs are "lumpers" where they try to lump you w the rest of their patients.

I have RA "from my head down to my toes" as so many great blues tunes have sung. I have it in my jaw, sometimes cannot talk or chew without pain. In my mouth via periodontal disease which they now know that is highly correlated w RA. Apparently, a certain bacteria which is responsible for much of the damage in periodontal desease secretes an enzyme which triggers the immune system to attack the enzyme and in the process the immune system destroys gum tissue and teeth, hence triggers an autoimmune response.

RA in my neck and lower back,lost 2 inches of height by age 55. Gained a inch back w a TLift back fusion surgery which was very successful 3.5 years out. I have shoulder erosions on x ray, have multiple bouts of frozen shoulder syndrome, bursitis, tendonitis, carpel tunnel, and the most painful tenosyovitis you could imagine everywhere possible, bakers cysts, RA nodules growing on RA nodules, RA in my gut so bad my gut almost burst open in march of 2005 ( they call it IBS because they do yet understand how RA effects the gut yet says my Castro doc), RA in my lungs and some heart issues as well.

Had maybe a dozen surgeries from RA stuff in last 15 years, dozens of CT and MRI, nerve studies, bunch of colonoscopies, other procedures, lumbar punctures, constant blood work, misdiagnosed w lupus and MS, had anemia, skin will not produce any vitamin D, have no b12 no matter what I eat or how many pills I eat (self inject b12), migraines, and more.

2nd Rheumy tried to kill me w methotrexate. Refused to admit that mxt was responsible for my mouth ulcers 24/7 nausea, rectal bleeding and **** fissures. He said none of his other dozen patients he had on high dose injectable mtx had any issues. As if I was one of his lab rats he was experimenting on to study anticdotal science. Sorry, this ignorance w docs really bothers me.

And also the weird twitch disorder that started suddenly on Sept 1st of 04 at the peak of my undiagnosed Autoimmune H*all as I fondly call it. Mayo neuro doc called it Mononeuroitis Multiplex from autoimmune process.

So you know more than most my friends and docs about me. I look totally normal and you would never think I have any health issues at all if you saw me, my a limp, or a wrist splint, or cane or crutch if a flare. Good day/bad day, one day fine next day on crutches for 3 weeks. No pattern that makes any sense. Mom and Brother both w RA & Hypothyroid. Just hope I do not get Alzheimer's which took Mom to her grave, horrible to watch. Guess I wrote a small book, head injury is getting better. Thx for reading. Hope that I can offer any help or advice for anyone hear struggling w this crazy disease.
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Old 02-05-2015, 03:04 PM #2
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Red face

Hi I'm new here and don't understand this site at all! But I am away from home using my wee iPhone screen so that probably isn't helping much.

I just wanted to let you know that I too have RA and SFN that is thought to be immune mediated. My RA is seronegative although I did have a low post ive Rheumatoid Factor for the first few years. Methotrexate by injection drove it away and after four years it seems mostly absent. However unlike you I have high sed rate, CRP and PVC. I had a lumbar puncture a few weeks ago, ammongst other tests, and was found to have high immunoglobulin levels - which my general practitioner says confirms that my SFN is immune mediated.

Your RA sounds pretty heavy duty. I haven't used any DMARDs or steroids since June because I failed to tolerate the three I've tried. My RA is not severe enough to warrant Biologics so my rheumatologist told me to stay off and thought my RA might stay away too. He refused to imvestigate the nerve symptoms - which ive had for longer than RA. I also have Hashimoto's. Ideally I would like to try an infusion drug because the neuropathy is very nasty and is progressing and dominates my days and nights 24/7. The symptomatic drugs I've tried are Amitriptyline, Gaberpentin and now Duloxetine - which appears not to be doing much. Plus my GP has me on a moderate dose of Asprin to see if thinning my blood helps. Whereas naproxen and MTX made a big difference but I find them hard to tolerate - MTX made me sick both ends even by injection.

Take care,
Mat



Quote:
Originally Posted by mcmars View Post
I just signed on here due to recent head injuries and post concussion issues. But my main health are centered around RA,OA, Hashimotos, nerve damage from Autoimmune processes, DDD in spine, etc. I did an intro in the new member section, but thought I would let others know in the RA section that I have joined on as the RA seems to be the primary disease process for my complicated health situation. I would love to hear from others how may be able to share some insight and trade experiences about what is going on and what works.

Regarding RA, I have probably had it active since early 20's, but not DX till Nov of 2004. Had RF and anti-ccp positive upon DX in 04, along w erosions in hand/feet and RA nodules including lung nodules. However, the usual inflammatory blood markers have always been normal. This fooled the first couple of Rheumy docs who were not very bright, (treat the patient, not the blood work, remember docs, I think they teach that in med school). However, my GP doc sent me to Mayo clinic for 3 weeks of work as I presented w so much complicated stuff and when I asked mayo rheumy why inflammatory markers were normal, he calmly says, " In your case, I see your high platelet count as your personal inflammatory indicator". Wow, personalized patient centered medicine, but we look so much alike, you mean we are all different somehow, lol. Excuse my sarcasim, but so many docs are "lumpers" where they try to lump you w the rest of their patients.

I have RA "from my head down to my toes" as so many great blues tunes have sung. I have it in my jaw, sometimes cannot talk or chew without pain. In my mouth via periodontal disease which they now know that is highly correlated w RA. Apparently, a certain bacteria which is responsible for much of the damage in periodontal desease secretes an enzyme which triggers the immune system to attack the enzyme and in the process the immune system destroys gum tissue and teeth, hence triggers an autoimmune response.

RA in my neck and lower back,lost 2 inches of height by age 55. Gained a inch back w a TLift back fusion surgery which was very successful 3.5 years out. I have shoulder erosions on x ray, have multiple bouts of frozen shoulder syndrome, bursitis, tendonitis, carpel tunnel, and the most painful tenosyovitis you could imagine everywhere possible, bakers cysts, RA nodules growing on RA nodules, RA in my gut so bad my gut almost burst open in march of 2005 ( they call it IBS because they do yet understand how RA effects the gut yet says my Castro doc), RA in my lungs and some heart issues as well.

Had maybe a dozen surgeries from RA stuff in last 15 years, dozens of CT and MRI, nerve studies, bunch of colonoscopies, other procedures, lumbar punctures, constant blood work, misdiagnosed w lupus and MS, had anemia, skin will not produce any vitamin D, have no b12 no matter what I eat or how many pills I eat (self inject b12), migraines, and more.

2nd Rheumy tried to kill me w methotrexate. Refused to admit that mxt was responsible for my mouth ulcers 24/7 nausea, rectal bleeding and **** fissures. He said none of his other dozen patients he had on high dose injectable mtx had any issues. As if I was one of his lab rats he was experimenting on to study anticdotal science. Sorry, this ignorance w docs really bothers me.

And also the weird twitch disorder that started suddenly on Sept 1st of 04 at the peak of my undiagnosed Autoimmune H*all as I fondly call it. Mayo neuro doc called it Mononeuroitis Multiplex from autoimmune process.

So you know more than most my friends and docs about me. I look totally normal and you would never think I have any health issues at all if you saw me, my a limp, or a wrist splint, or cane or crutch if a flare. Good day/bad day, one day fine next day on crutches for 3 weeks. No pattern that makes any sense. Mom and Brother both w RA & Hypothyroid. Just hope I do not get Alzheimer's which took Mom to her grave, horrible to watch. Guess I wrote a small book, head injury is getting better. Thx for reading. Hope that I can offer any help or advice for anyone hear struggling w this crazy disease.
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