So sorry your Dr. doesn't get it. My rhuemy is the same way -my blood work is good so I must be doing good -never mind my joints deteriorate and fall apart one by one needing replacements. Doesn't seem like all the meds are working to me. My family Dr., however, does understand and does try to do all she can to help me. I am going to be in trouble when she retires -I have had her since I was 16, don't think I will find someone like her :((
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My rhuemy is quite understanding, where you can get in to see her. She has 2 young toddlers now, and only works (as a doc) a day and a half or so per week. But she knows how to ask the right questions, and really listens, also orders the right tests and thoroughly digests the results. I am glad to have found her. Her PA is also attentive, and faithfully passes on the results of my visits when I have to schedule with her. You still have to be proactive. It is squeaky wheels that get greased. Docs have plenty to do already. They won't look for more to do for you if you don't tell them what your issues are, maybe even bring in treatment options to discuss. That is how I got my new regime of hand exercises, and a set of braces to try to stop the finger deviation that has plagued me the last few years. Don't forget to ask for physical therapy. Meds alone cannot counteract the effects of this disease, and surgery is risky for us, especially while on biologics and any immunosuppressant.
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I am lucky in that my Rheumatologist DOES understand. He has Psoritic Arthrititis and often is trying to work through the pain, nodules, and overall disability that these autoimmune issues cause. On one hand it means that he is awesome at patient understanding and being proactive on the treatment front. On the other it means that I have to be understanding when he has to call in sick because he also is having a flare.
There is usually a wait for my doc. I don't mind. He understands that just because your bloodwork is fine and you look okay does NOT mean that you feel okay. He also asks right off how I am feeling and about any stresses at home (like asking how my husband is doing with his cancer battle). He also understands that pain is VERY subjective and what looks "fine" may be off the charts on pain. Pain management (whether it be through physical therapy, heat/cold, or medications) is one of his strong suits.
I have been with this doc since he first graduated from med school and have seen him move up and gain his own practice (his nurses gladly followed him away from the place he started). There are pluses and minuses to having a doc that has a similar disease--but most are on the good side.
Make sure if you don't have one that understands that you are proactive about your treatment. If you don't feel the regimen is working, speak up and challenge the doc. If they have a problem with this it may be time to find a new doc. --Heather
YOu are so right they don't get it All they see are the numbers from the lab work up This is with any doctor they don't see us a tangible person only see the lab reports say how we are doing. One reason besides having lousy medical coverage so I can't afford doctor I'm trying ot figure out what works for me with out all the meds
We notice the outward appearance the doctors the inward lab reports so your numbers maybe doing great but not the rest of you I decided along time ago its a no win situation
Linda (Florida - Eastern Standard Time )
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I said goodbye to my rheumy in NYC this week. My transportation to the city has dried up so I will be starting with a new local rheumy. I was frustrated though. This doctor, I"D THOUGHT, really had a clue about how bad I feel. However, now that I'm on Enbrel, it's like he's put a "cured" label on me. I can't type much of the time...my hands hurt too much. I cannot put weight on my feet without gasping and hobbling. My arms don't raise or straighten. It takes me a half an hour to change clothes. yada yada yada. And the rheumy looked at me and said, "Oh you are doing SO MUCH better!!" I am?? When will I start to notice?
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