Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

Update: Well, my Internist was actually very, VERY concerned. He took some x-rays and did the blood work for Lyme disease and rheumatoid arthritis. I'll get getting the results of the bloodwork on my birthday. He wants me to see a rheumatologist no matter what the RA test says because he said there are over 100 different kinds of athritis and many people with RA don't test postiive.

Any recommendations for a good rheumatologist, preferably one in Nassau and/or associated with Winthrop?

FWIW, my knee x-rays were clean (despite the fact that I've had on/off knee pain for years) and my spine only showed some degenerative stuff, which I've very young for.

No family history or RA, but a family history of OA (osteoarthritis), which I don't appear to have from the x-rays.

Argh. I'm actually a little freaked out. As I was explaining to my doctor and just to my parents... I have been in pain for so long (since I was a kid) that I never realized just HOW abnormal it is until it started getting worse -- and until the joint stiffness started getting really, really bad.

So, if anyone has some spare prayers, please send them my way...


Also if anyone is willing to answer some of my original questions, I'd appreciate hearing stories:

Does anyone here suffer from rheumatoid arthritis? I have a few questions if you don't mind...

Could you share what your symptoms were and how you were diagnosed? Also, if you don't mind sharing, can you share how old you were when you were diagnosed / when your symptoms started?

Message edited 4/9/2010 10:49:46 AM.

Re: Does anyone suffer from Rheumatoid Arthritis?

I do not have RA, but my mom does. After 9 months of different doctors, specialists, etc and such severe pain she was bedridden for 4 months, my mom was diagnosed with it.

Her PCP could not diagnose it. For my mom, it started in her elbows (which is unusual, as it usually starts in your hands/fingers) and it was so bad that she had to have her elbow operated on b.c it was bone rubbing on bone--all of the cartilage was gone. She was in such severe pain, and then it was her knees--very swollen & Hot to the touch. It would not allow her to even stretch out her legs, she had a hard time walking, and would get a lot of cramps in her legs--she was downing bottles of tonic water b/c that is supposed to help with charlie horse type cramps in your legs/feed. A symptom of RA is if you touch the joint that is affected, inflamed, it will be hot.

My mom finally went for a 3rd opinion to a different Rheumatologist, nd that is when she was finally diagnosed, and started her medication regimen. The doctor ran lots of bloodwork, tests, etc. It is said that 75% of the time, the test for RA is negative, even though the person has textbook Rheumatoid Arthritis.


I ahve done a lot of reading up on it, and asking about it, so I am becoming pretty educated in it.

Hope you feel better.

Re: Does anyone suffer from Rheumatoid Arthritis?

Thanks! I have a friend with JRA (juvenile) also that I have been talking to. It really is awful -- I hope your mom is doing well.

I'm not expecting my PCP to diagnose it -- just to give me guidance on what type of specialist to see.

ETA -- I also have an orthopedist I can call. When this first started happening, he told me to keep an eye on it as it sounded like it could be the beginning of RA... I think that's why that is in my head...

Message edited 4/8/2010 10:22:35 PM.

Re: Does anyone suffer from Rheumatoid Arthritis?

A regular PCP cannot diagnose it. You need to see a rheumatolotist. It is an autoimmune disease.

Re: Does anyone suffer from Rheumatoid Arthritis?

Sorry that part of my post was confusing... I KNOW my PCP cannot diagnose it. I am hoping he can refer me to an appropriate doctor to see, since I don't know if my symptoms indicate that I need to see a rheumatologist. I don't want to waste my time (or the rheumatologist's time) if I shouldn't be there to begin with...

Message edited 4/9/2010 8:17:17 AM.

Re: Does anyone suffer from Rheumatoid Arthritis?

Kara, sorry you are hurting.
I would go to your PCP or call him and get a referral for a Rheumy. It's autoimmune and that's the right doc.

An orthopedist can help you with PT recommendations but first get some answers.

Good luck. Please let us know how you are doing.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

No advice but lots of

I understand when you said that you don't realize that it had gotten 'so bad'. I was the same way with my nasal polyp/sinus issues. I never realized how bad it had gotten until it cleared up due to some meds I was taking for another condition. Sometimes it happens so slowly that you don't realize how much you are suffering.

Please let me know if there is anything I can do to help.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

I don't have a doc rec for you but doesn't your PCP have one?

Either way you can get treated. There are new meds out (I'm on one of them for another autoimmuine issue) and they do help.

I hope you get some answers fast so you can get on the road to feeling better.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

i have a rheumy for you ..... 2 of my closest friends go to her she is amazzzzzzzzzzzzzzzzzzzzzzzzzing!



kristina belostocki
winthrop rheum, allergy and immunology

120 mineola blvd suite 410 mineola ny
516 663 2097


she will check everything and is not an alarmist but soooo sweet and throurough............

one of the friends does have ra...and the other lupus


good luck xoxo


ps bringany blood work with you,,,but she will do a full panel and wont think you are wasting her time!!!!!!!

Message edited 4/9/2010 4:58:31 PM.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

Many thanks for the recommendation!!

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

yw let me know if you see her! xoxo

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

I don;t have any advice but here are some and .

My MIL has RA and was diagnosed in her early thirties. She is still alive and doing quite well at almost 76. I hope you get some definitive answers soon

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

{{{hugs}}} My mom has had RA since she was in her 30's. She's in her mid-70's now and still drives, gets around on her own and cooks every night. She's still suffers alot from the pain and she's had both knees, a shoulder and both elbows replaced with artificial joints but thankfully she's still mobile and not confined to a wheelchair.

There have been a lot of amazing advances over the years in terms of medications and treatment which offers a lot of hope. I wish you the best.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

Good luck. A friend of mine was diagnosed with both lupus and rheumatoid arthritis- it took a really long time to diagnose her because neither condition manifested itself in the usual way. But she's doing well now.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

I was diagnosed with RA in 2005. I had been exercising alot and began having pain and swelling in one knee. I went to my primary, who referred me to an orthopedist. My MRI results indicated that I had RA. I was so surprised! I had had pain in my fingers and hands a few months prior (that went away) so I didn't think much about it. Then it all made sense. Now I suffer from stiffness-especially in my hands, wrists and shoulders. I still have some knee pain and stiffness, but not much swelling. There is no familiy history.

I also see Dr. Kristina Belostocki in Mineola. She is wonderful! My blood work usually comes back normal, which is quite common from what I am told.

FM me if you have any questions. Good luck to you!

Diane

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

I do not have rheumotoid arthritis, but I have lupus. For me this disease started with joint pain and fatigue and showed some similarities to RA. My primary doctor ran bloodwork for lupus, RA and Lyme and then referred me to a rheumotologist who did more tests and diagnosed me with lupus.

Not sure I can answer questions about RA, but FM if you think I can. I am not wild about my current rheumologist, so I don't really have a recommendation for you. I am very sorry you are going through this, and I will pray that you do not have RA, or if you do, it is a mild case and will prove manageable.

Re: Updated - went to doctor... Does anyone suffer from Rheumatoid Arthritis?

I have RA, I was diagnosed in 1999 with JRA. I now have RA. My rheumy is in Manhattan. I love him so much that even though I am in Florida, I kept him and I fly up to see him.

If you have any questions, feel free to FM me

ETA-Diagnosed at 18. Symptoms were achy joints in both hands. I had pneumonia at that time and a muscle ripped and didn't heal. I was tested by my PCP and my RA factor was positive. I also have a positive ANA panel. My symptoms usually are achy stiff joints that take forever to move, a hard time using my hands, and exhaustion.

Message edited 4/12/2010 5:12:51 PM.