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Old 09-29-2006, 02:41 PM   #1
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madamkitty HB User
Unhappy I really need some info

I was dx with RA in 1999, I've been treated with almost every drug used in the treatment forit. I've proven to be VERY drug sensitive and have scars on my face and arms from one allergic reation that nearly killed me. The rhuemy I've been seeing for two years put me on Remicade and I started getting huge welts all over my body after the 3rd treatment. Them he wanted me to try Humeria and I admitted my fear of needles and that I didn't think I could give myself a shot unless it was a life or death situation. He then took me off of all meds except naprosyn and sent me to a pain management doctor. He now says he doesn't think I have RA but instead I must have an autoimmune disease with arthritic tendencies. He's done no other kinds of test to prove this diagnosis and does nothing to treat my fibromyalgia that he diagnoised. I've finally had enough of him and I'm going for a second opinion with another Rhuemy in November. What kind of test shoul I ask for to be diagnoised with and autoimmune disease? What is the ANA I keep reading about. I do know my sed rate and RA factor stay extremely high and has since I was first dxed. I don't always have nodules, and then only on my elbos. My joints are constantly swelling and always hurt. I've been given an epidural in my lower spine because of 2 bulging disk. My pain management doc has also found I have arthritis in my spine and the beginning of scoleosis (sp). He sent me for orthoscopic surgery on my right knee after finding that the inflamation was cripling me, while in surgery, the surgeon fixed a torn ligament, and stretched tendon, drained a cyst and reset my knee cap where it's supposed to be instead of off to the left. I had the surgery in July and I'm already started having pain again in the knee, not to the extent of what it was tho. I am also bi-polar so I get treated like I'm a hypercondriact and that it's all in my head by a lot of doctors. I hate that. This Rhuemy put me out of work in Nov 05, because my legs swelled from the knees down to twice their size and I could barely walk. But when I went and got an advocate to start my paperwork for disability he started putting in my records that I was getting better. In direct contrast to what my pain management doctor is saying. From the first time my pain management doc say me he told me I would never be able to work again because the problems I'm having are dengenerative. Thankfully he put that in His records too. I'm more concerned with the autoimmune disease at this point.Any ideas?

 
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Old 10-06-2006, 10:40 AM   #2
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dahlek HB User
Re: I really need some info

Gee, Miss Kitty, that's a whole lot of stuff going on!

I'm going to address lots of things here, but right off I've an auto-i condition for which I get IVIG monthly...LOTS of needles! You are talking to someone who used to TOTALLY pass out at the sight of one coming in my direction...BUT you have to do what you have to do - SOO plain old DON'T LOOK...remember to breathe..not hold your breath and let it happen...Got it. I've gotten those IV lines into me w/little mishap for 2 1/2 years-not to mention extra blood tests [durn those vampires!]..not to mention the unsuccessful attempts. Mindwise just put yourself in a different place...best of THE PERFECTEST BEACH with the soft winds and surf etc. OR Think Car wreck!...it's all a different place from the NOW.

Auto-I diseases are first hinted at thru regular blood tests...leading to specialized tests that usually end up with the oft-dreaded Spinal Tap. For me it wasn't that bad, just follow the 'after-you've-been-done' instructions to the LETTER!. The worst part is the waiting...usually a month to 6 weeks.
'Web' up about the blood tests...get copies of your tests & results & LEARN...you'd be surprised at what you can find out...and, at times, confused.

As for legs swelling...how's your Thyroid? It happened to me-feet turned into giant BOATS that I couldn't walk on... It's all in the mix. Synthroid med adjustment? Perfect results. [The feet swelled up at least 3 shoe sizes]

So, I mite not have answered your main question, but at least others a bit. Good for you to find and get an advocate. Maybe it wouldn't hurt to get a second Rheumy opinion...second opinions are cheap compared to the damage a lazy doc can do...Docs KNOW how diligent/or not other docs are...keep them all on their toes - getting and keeping updated records yourself [and they cannot deny you this, tho you may have to pay] so any new doc's opinions can be based on the tests, and tests only for a new outlook.

Good thoughts and heart your way!

 
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