I saw my GP today and I told her I wanted it out. She just kinda looked at me funny. LOL
She was hoping we would hear back from the NIH by now and had her secretary call who was just put through to someone's voicemail. She's concerned because they never received confirmation that my info had been received. I don't know if they were supposed to, but without it she has no way of knowing if they've even reviewed it yet.
So, we are doing the Plaquenil again (anti-malarial medication that has anti-inflammatory properties and is FDA approved for lupus and RA). We had done it in the past with no success, but she only had me on 200mg. I looked it up on rxlist.com last night and it said initial dose should be 400mg once or twice a day until desired results, then reduce it by 50% for maintenance dose. I printed that off and took it to her, so she put me on 400mg and I go back in a month. I'm also doing low dose steroids - 20mg for 5 days, then 10mg for a month.
I've had this (bursitis) since childhood, a bit more pronounced by mid-teen years. It was something I was always aware of, but it was never really a problem. Shaving in the shower was difficult because I can't support my weight on that leg without a lot of burning and weakness. But within the last 4 years it has gotten progressively worse and I can't even walk the grocery store. Not even close. And in a flare - forget it. I could barely walk last night - having to hold onto walls and furniture. So, I also have a rx for a 4-pronged cane. Sigh. I'm *only* 35.
I told her if these medications don't help and the endocrinologist doesn't have any answers, my next stop is an orthopedic surgeon. I've done the steroid injections - no longer working. I get limited relief with oral steroids - works while I'm on them, but starts up again within days when I'm off. NSAIDS don't even touch it - might as well be eating candy. I do have it on my left side, but nothing at all compared to the right. My left side is what my right side was like in my mid-teen years.
It's pretty obvious I have some kind of systemic inflammation. Right now, my hips, shoulders, neck, lower back, knees, heels, wrists and ankles are affected. From what specific disease process, we don't know. Saw the GYN today and she thinks my urinary problems are a neuropathy - which is what I've thought all along, but my stupid neurologist just blows off. She agreed that we have to get the inflammation under control to get the neuropathy under control. Still think I have Cushing's because I have all of the hallmark signs, but it could even be pseuo-cushing's brought on my the physical stress my body is under.
I told my doctor that they can do the bursa surgery arthroscopically and she just looked at me. I told her I'd been reading.
She said I pretty much have a degree in rheumatology.
She's a cool doctor. I'm lucky to have her.
Anyway, if this plan of action doesn't work it's coming out. I don't care who I have to bribe or blackmail. It's coming out. And that's all I have to say about that.
On a more sobering note, my GYN (new doctor to me) said that I'm lucky to have my doctor because most doctors dismiss complicated patients from their practice. They take up too much time. Isn't that terrible? Shouldn't that be considered unethical? What do people do that aren't lucky enough to have a doctor that cares and is willing to take this on? I know I've been dropped by doctors and this is probably why.