Today I saw another rheumatologist. I wanted another opinion. This doctor came highly recommended...heck, he was even President of the American College of Rheumatology--woohoo! He must really know his stuff, right?
I took all my medical records and walked into this (much nicer) office with high hopes. The nurse practitioner examined me, talked with me, and spent a decent amount of time asking me questions. She was nice. After a little while, she left to discuss my situation with the doctor. Fifteen minutes later, they both walked in. He shook my hand and almost immediately told me that after reviewing my records, there was NO WAY I have rheumatoid arthritis, undifferentiated spondylarthropy, psoriatic arthritis, etc. Since my tests have all been negative and based on my exam with the nurse practitioner, he believes that I have Fibromyalgia and Chronic Fatigue Syndrome. (oh, and severe osteoarthritis in my big toe) He says that my rheumatologist ALWAYS gives the same diagnosis. He implied that he is out of date in some of his testing methods and diagnosis procedures. WOW.
This doctor says I won't die from this. (DUH. I know that. But dammit some days I want to!)
He says I should stop the mtx and continue all my other meds. He says yoga and pilates would make me feel better. He, then, said that I could schedule another appointment with him if I need to in about 6 weeks.
I left there in tears. I feel like I am back to square one. I'm not sure what to do. Which doctor do I believe?
I'm so bummed.
Stay VIGILANT... that is what you do. If you don't believe he is right after a tone of research, question him further. Challenge him to prove you wrong if you will. Ask for specific testing if you come across something that applies to you.
ReplyDeleteFYI: you can have sero negative RA, you can have negative ana/lupus test... etc... it goes on and on. NOT EVERYONE follows the text book protocol. If you hurt, chase it with knowledge.
I was 10 years trying to find out what was hurting me. I finally found out with persistance. I had doctors look it me as thought I "needed" something to be wrong. How dare they. I fired everyone of them. Then I found a young eager rheumy who was IS willing to work with me and MY symptoms and not neccessarily the DX. Stay strong. That is a must. It's okay to leave in tears, cry it out and then get proactive again. It was a cycle for me for years. Now and then, I still cry from the pain. This time it's not emotional pain, it's real physical pain. We are still trying to find a combo that works for me.
Stay strong. Hugs. Tammy
Hi Beth,
ReplyDeleteYou said to say hi anytime, so I'm saying...hi I suppose! Lol...I am so, so sorry you're having a difficult time right now : (
I definitely know how you feel. I am a new freshman in college this fall and 18 years old. I was diagnosed with Rheumatoid Arthritis four years ago, but have been dealing with symptoms for about 7 years or a bit more (the diagnosis process took 3 years or a bit more). The summer of 2009 I was diagnosed with Carpal Tunnel and CTRelease surgery on both wrists. Surgeon was the same doc who diagnosed me with the RA and was furious at my rheumatologist!! She blames him for the whole thing (he was a terrible, terrible doctor....).
So she got me set up with my now rheumatologist who is SO much better lol!! He listens to me and even when he thinks I seem ok, if I tell him I'm not....then I'm not and he searches for the answer. Currently I'm having a lot of troubles again. That's how I feel these four years have been, you know? I'm doing OT for my left elbow currently. They think it could be tendons? But I just hurt and ache all over...lol it's a constant!
I was going to ask you what your symptoms were for Fibromialgia (sp? lol!). I don't think I have it, but you never know, right? I was also just informed that since my grandma has it and I have the RA, I need to be on the lookout for symptoms/signs of MS....*sigh* just another thing to add to the pile of my medical "stuff".
Sorry for rambling SO much!! I'm just trying to reach out to other people...."like me" for lack of a better term. I want to form a support system that knows what it feels like. Yes I have family and friends but they don't completely get it, you know?
So I thought I would leave you a comment, hopefully you get it sometime!
Thanks *hugs* Hope you feel better soon!
Hannah
I just had a very similar experience with my new rheumatologist.
ReplyDeleteI'm 18 and started having symptoms a little more than a year ago. I'm sero-negative and don't swell very much but my rheumatologists at the Children's Hospital still thought i have RA and started me on methotrexate.
Then I moved for college and went to a new rheumatologist and he acted very skeptical that it was anything inflammatory and made me feel like I was silly to think I wasn't just fine. It was complicated enough to figure it out the first time around and now it feels like I'm starting all over again with this new doctor.
I'd definitely question him, though, if i were you. If he is older, he is probably more set on the old ways of classifying RA even though a lot of people's symptoms don't present like the book. I'd especially question the fact he didn't even look at you before making a decision.
Anyway, good luck with dealing with the doctors and figuring it all out!
Annie