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New to this board - my RA story


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Old 08-17-2008, 01:05 PM   #1
Moldova
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New to this board - my RA story

Hi everyone! I will try to be short in sharing my RA story.
I had childhood RA and was taking medication at that time. Until I was 30 when one Dr told me that he believes I don't have RA anymore and I was taking some meds from Fibromyologa for years.
I had 2 major spinal fusions done during last 2 years, disabled since; surgery failed. I leave in Chronic pain 24/7.
In July of this year was diagnosed with MS; couple of weeks ago was diagnosed with severe case of RA.
After going to 3 Rheumotologist and having app for 3 minutes with dx like: What do you want, you have MS, you had 2 major spinal surgery and you want to leave without pain? Nobody even listened what I had to say.
Until I found this wonderful Dr at Hospital for Special Surgery in NYC who looked at my hands, heard my history and told me that this is first time in her practice she sees such severe case of RA and that I have to start my treatment ASAP.
Not only that i leave in such severe pain all over my body with every possible joint affected by swolleness, no cartlidge in my both knees (right knee had 2 surgeries already, the first one at age 25); in both of my elbows I had turned muscles and ligaments and severe tears in them. Shoulders got same problems. I got internal inlarged nodules in my lungs and on a neck due RA. This all due to severe inflammation all overy my body and nobody picked this up before.
I am under Pain Mgmt Dr care at same Hospital. He is the one who kept telling me that something more is going on with me and suggested to be checked for MS. And now this horrible case of RA.
I am very disapointed to say the least with all "good" reputable DRs who I saw before and I waisted so much time without treatments.

Anyway, she put me on Met. (chemo therapy meds as you all know that is why we may loose our hair). First week I take 3 pills - 7,5mg with one mg Folic Acid from sores in a mouth and anemia. And it goes up every week...
Prednisone - 3 pills a day, 5mg each and goes up every 4 days till I am done for 10 days and than one pill a day. Don't know for how long yet.

I had TB when I was a teen. She would like me to go on A. shot, but the problem is person who had TB at any age has antibodies for the rest of your life. This shot can provoke TB and it can become active!!!!
But based on my situation she still wants to try believing that if I wasn't sick for all this years - means I will be OK.

My question for you - please help!
Can someone advice if they beein in my sitation with this shot thing and being treated even for TB. I am 53 years old now and wasn't sick with it since, but I am afraid what if...??

Thank you in advance,
all the best to all of you!

 
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Old 08-18-2008, 02:55 PM   #2
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Re: New to this board - my RA story

Wow! I belong to a couple of other boards and I never had such "Welcome" !!!

Nobody has anything to say? Please, dear people, help!

 
Old 08-18-2008, 09:46 PM   #3
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Re: New to this board - my RA story

Sorry Moldova but I couldn't answer your question because I don't know anything about that shot. But I would like to welcome you here. I am not as active on this board as others but I am sure someone will be able to help you. I am so sorry for everything you have had to go through because I have followed you on other boards. I hope you have finally found someone who can help you. I just answered another one of your Thread's because I was familiar with that situation.

Take care
Linda

 
Old 08-20-2008, 09:07 AM   #4
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Re: New to this board - my RA story

Thank you, sweetie! I feel so bad for you that you are off all meds - something is not right!
I know why it's so important for RA patients to have on going treatments otherwise they may end up like me.
I have my every joint effected: 24 joints and 27 muscles/ligaments/soft tissue. I got my elbows, knees and shoulders muscles and ligaments very significant tears and turned muscles. I need now surgeries on both elbows and right shoulder because of this situation. And only because I did not get the right dx and did not start treatments while ago.
Honey, can you check if this is OK for you not to have anything? This is a serious condition and it needs to be addressed right...

Hugs and blessings...

 
Old 08-20-2008, 11:59 AM   #5
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Re: New to this board - my RA story

Hey Moldova thanks for the hugs and blessings. It sounds like you are in a terrible mess and I really hate that for you. You have so much going against you for right now but still concerned about others. I have been thinking about changing my doctor but right now my insurance will only pay for him but he is suppose to be one of the top. Right!!!! I go see him soon and guess he and I will have to have a good talk. I don't know of any other surgeries coming up except I was suppose to have surgery on my left elbow for pinched nerve and also left wrist for carpal tunnel. But I just don't know because my right elbow still gives me a lot of pain after having surgery on it for the same thing last October. I might be better just to leave it alone. Good days/bad days. He put me on Mobic but I couldn't take that and really the Methotrexate really helped my pain so I thought he would go back to one of the DMARD's but he didn't.

Do you know when you will have to have some of your surgeries? You take care and get some rest.

Gentle Hugs
Linda

 
Old 08-20-2008, 04:38 PM   #6
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Re: New to this board - my RA story

My Rheumotologis told me NO Surgery until all inflammation is down!!!!
She said any surgeries or simple procedures would be a failier because when your tendons, ligaments and muscles inflammed - I will never get any relieve after any surgery.
No reason to have this done so far.
My Ortho agreed 100% to it and very happy that I was dx before he went in since surgery wouldn't be a sucsess due to inflammaion all over the body.
I have to treat my problem with RA first and than think about something else.
She said that often people after treatments don't need any surgery anymore; tissues heal by itselves and no surgery needed.

Surgeons are not telling you that; they are too knife happy sometimes and you the one who ends up with more pain than before the surgery.
So right now my main goal is medications and follow directions of my Rheumotologist. Later will see what happens. Surgery would be the last resort ever.

Thank you for your words; I do care for people. I know what they feel since I am in same boat and it brakes my heart to see how they suffer.

Best of luck...

 
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