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My hands are toast so this will be short. My sed rate is in the 30's, its supposed to be 19 or under. This sed rate is after being on all my drugs for months. The c reactive protein is supposed to be more sensitive to the amount of inflammation than the sed rate. Again though it was just checked and I've been on "drugs" for a while so not sure if the drugs make it show normal when its really not?
Never had the sleep study. I don't think it would be accurate because I'm very sensitive to changes in my surroundings. I've got to have MY bed, pillow, blanket, heating pad, dogs, etc or I would never sleep!! 
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Taking it one day at a time.....
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Re: sed rate
#283216 - 09/20/06 12:15 PM
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Susie2
Reged: 08/07/06
Posts: 158
Loc: Pomona California
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I was surprised to see that it was that high (finally got a copy of my labs and stuff from my little hospital stay). The GI didn't say anything at all about it. In fact, he said I was perfectly fine. "Irritable Bowel. All it is irritable bowel and for that the only cure is fiber. Fiber, Fiber and more Fiber." I felt like he was angry at me for "wasting" his time. He had hospitalized me because he thought I might have a bowel obstruction and I guess I disappointed him. But hey I gave him a rectal prolapse, hiatal hernia, GERD and a bit of gastritis. That should count for something. Last night I took celebrex which I had stopped taking as I was worried it might be exacerbating my gi symptoms and boy do I feel better re body aches today. I also slept well last night.
I never tested positive for RA antibodies. ANA was 8 with speckled pattern detected. Now I think all is negative with that test. I think I'll mention my ESR to the next doc I see. Next week it is a new GI and my orthopedist. I heard rumors that the ortho is getting a divorce and has taken up with someone in his office. I hope it is not true as I think he and his wife (also the office manager) are a darling couple. This is pretty sad when my life revolves around the doctors I see. Actually the doc is a member of my temple so I know him first from there and think he is a great guy and his wife is a doll. Must be midlife crisis. I think their kids have just gone off to college.
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Re: sed rate
#283236 - 09/20/06 01:08 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I've tried several of the prescription anti-inflammatory but never the celebrex, all the others caused too much gi upset. Now, they won't give them to me because of the gastritis, which I apparently don't have according to the endoscopy??
I would ask about the sed rate again, sounds like you definitely have something going on. I know certain medications can cause a false positive ana reading, were you on any medications when it was positive?
Typing is slow with just my left hand as my right is too swollen to move my first two fingers at all. Definitely going back up on the steroids, moon face, zits whatever, its better than this pain! 
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Taking it one day at a time.....
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Michelle,
For what it's worth I think it would be a good idea to see the doctor at the fibro clinic. I posted to you before that I know a woman who has symptoms almost identical to yours. She is currently not been able to eat anything for three weeks and having diarhea, alot of swelling, etc. Her doctors think it is Fibro related and are going to go about treating it that way. I will let you know how they treat her and how it works. But she has so much swelling she uses a scooter and the doctors think it is fibro related so maybe yours could be too.
I know all about money being tight. I would love to go to the fibro clinic in PA but can't afford it either. Extreme Fatigue is my biggest Fibro symptom. I really hope you find answers soon.
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Christie
~Hoping and Praying for Sleep!~
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Good step!
#283311 - 09/20/06 06:52 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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When I went in, they accepted insurance for the bloodwork, but you're right, aside from the lab, the fibro center won't bill insurance for you. You can bill them, though, and the people in my clinic who have insurance say theirs pays for up to 80% of treatments.
Their model is that fibro patients test in the "normal" range. The thing is, sometimes these normal scales go from like 7 to 500. So for a test like that, the ideal range would be closer to 253. But what if you test at 499? That's still "normal" based on the range (so a regular doctor would just sign off on it), but in a fibro patient they want you more in the "ideal" range instead of the "normal" range.
The closer I get to "ideal," the better I'm feeling.
They have supplements (i know, more pills  ) they want you to take, and they have IV treatments, which have been a lifesaver for me. Insurance will cover most of the cost of the IV treatments, but you do have to pay out of pocket first. 
I should mention, each clinic offers free seminars on fibro. I am told that if you go to a seminar (1 hour, I think) they will give you a coupon for a % off either your meds or your first visit. It might be worth going to hear the doctor talk to take advantage of the offer. 
The upside is the care. It is what keeps me coming back. They really know what they're talking about and they're INTERESTED in you. When I get my IV treatments, I talk with the other patients at the clinic, and it is almost exactly like the boards. Everybody's story has the same undercurrent.
If I could go with you to your first appointment, I'd be there to hold your hand. Mel is putting hers on her credit card, and I'm tapping my mother for cash to go.I'm just considering it an investment, because without it I wasn't getting any better.
At least I know I'm not crazy for having all these seemingly unrelated, awful symptoms. And all the normal test results.
~nelly~
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Thanks Tissy, please do keep me posted about your friend. I am still considering going. Its just we are struggling so much money wise at the moment. My hubby owns his own business and its really down and they keep raising our health insurance blah, blah, blah.
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Taking it one day at a time.....
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Re: Good step!
#283377 - 09/21/06 08:02 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks Nelly, I'm going to go through my medical folder and check the results of my tests again and see how close to optimal my readings are. I just may end up asking the doctor I work for to pay for this for me. I've worked for him for 8 years now with only minimal raises and he knows how sick I've been. If it increases my productivity, it'll benefit him too!
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Taking it one day at a time.....
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