Allow me to introduce myself

By rmoorejr Saturday, July 25, 2009

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My name is Rob, I am 40 years old and have had severe RA for 16 years. Mine is not the traditional RA in that it does not attack symmetrical joints. I have tried every med there is and even tried a stem cell transplant in Chicago (10th person in the US) but that failed as well. I have had bilateral knee replacements at age 30, a wrist and ulna replacement, 2 elbow synovectomies, and an upcoming elbow replacement and finger fusion. In the beginning of this year I was diagnosed with rheumatoid vasculitis, which is inflammation of the blkood vessels and arteries. I am here to answer any questions that I can, as I have experience with just about everything. I am on long term disability, got approved for SSDI in 3 months. Please feel free to email me with any questions you may have. If you would like to see a speech I gave about my RA on www.youtube.com search for "Memoirs of my unwanted guest"

Take care

Rob

amyloidosis

Comments (9) | Add comment

lorna

7/27/09 8:33am

Hi Rob! My name is Lorna. I am 48 years old and have had severe ra for 30 years. I have been in a wheelchair for 7 years. I just had my first surgery which was a hip replacement in April 09. That went very well. I am now facing a shoulder, elbow and double knee replacement. I am very excited about being able to walk again and just wondering how difficult it will be as I feel as though Ive forgotten how to walk. Ive talked with many people with ra but not as severe as this. Id like to know more about your double knee replacement,how painfulit was after surgery,how long in rehab,how long was the surgery etc... If you could give me more info on this that would be great! Thankyou Lorna

Rob

7/27/09 8:50am

Hi Lorna,

I didn't have both knees done at the same time - 1 year apart. The rehab was about 6 weeks before I could drive - painful. It was ultimately the best thing I ever did though.

lorna

7/27/09 1:27pm

thankyou so much for the info! Best of luck to you!

Ratnapriya

7/28/09 2:13am

Rob

I would like to know how hard you have to work with your knee after knee replacement to get back your mobility. I suffer from drug induced RA not very typical, which started with muscle degeneration and then later settled to RA. My problem is that, I have an inherent muscle weakness too. So even though the doctors are ordering for knee replacement I am shying out of it. I am 48 yrs working woman who can still walk painfully without stick on plain land and with stick on rough terrain. I am terribly afraid to lose that too.

Ratnapriya

Rob

7/28/09 7:29am

Hi,

I was 30 yrs old when I replaced my right knee and 31 when I did the left. I did not do a ton of work, but novacare helped me gain my mobility. They said age worked for me with the rehab as I was naturally stronger.

Lene Andersen, Health Guide

7/31/09 10:21am

Thanks for the introduction and welcome to MyRACentral! I'm sure you'll be a valuable addition to the site - you have the long perspective and that can be very helpful to new users.

wnfoco

1/ 5/10 5:38pm

Rob,

I am new to both RA and this website. I am 42 and was diagnosed two months ago with RA. Over the summer my RH was negative but the rheumatologist did an anti-ccp in October and it was 250+. I've been taking both methotrexate and prednisone which initially helped tremendously. However, I am backing off the prednisone (doctor's orders) and have been having flare-ups.

My main concern is that I seem to be having tingling in both my arms and legs and numbness in feet and fingers. Occasionally I have stabbing pains in my hands and my heart feels like it is racing. I have experienced raynaud's for a couple years - but that usually is due to the temperature - but this is different and persists throughout the day. Everything I seem to find on the web indicates that it is vasculitis - but that usually occurs after long term treatment for RA.

Could you explain your symptoms? And, what it took to receive the diagnosis? Also, what about diet - is there anything that helps/hurts? What about stress - and how much does it effect your disease?

I appreciate your help!

rmoorejr

1/ 7/10 10:41am

My symptoms of vasculitis were I woke up with numbness/dead skin feelings in part of my feet. That lasted for a couple weeks and started spreading to my other foot. My rheumatologist ordered labs, checking my c3 and c4 complement levels and my SED rate. My SED rate was higher than usual and my c3 level was low. I then noticed lesions on my lower leg near my ankle. The labs and biopsy of the lesion confirmed the diagnosis. I never had symptoms in my hands. As far as diet, I tried the elimination diet, but found nothing that worked. Hope this helps.

Take care

Rob

wnfoco

1/10/10 1:39pm

Rob,

Thank you for your response. After meeting with my Rheumatologist - we are hoping that it is just a result of medication interaction... hope that turns out to be true.

I appreciate your help and wish you good luck with your health!

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