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broken Posts: 9223
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hey guy we need some input.. kera has been told by one doc she has fibro all the symptoms but an other doc isnt conviced because her sed rate is off.. 56 and 46 due we have any idea what can cause this and what could she suggest to the docs.. they are stumped... Hat, could hashmotio be? Kera is my niece and I am worried for her we all have alot to give if one gets the help then some of this suffering is worth it..
remeber I am not a doctor I just say what I think
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hatbox121 Posts: 10493
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Not enough info my dear! Does she know her ANA, RF factor, any thyroid testing done, or her CRP? A high sed rate generally means inflammation in the body somewhere. Or injury. That being said it is very unspecific since lots of things cause a high sed rate. Any autoimmune illness can cause it along with several other things, including infections etc. Polymyalgia Rheumatica, Palandromic rheumatism, RA, lupus, multiple thyroid issues, etc can cause symptoms similar to FM and have a high sed rate. They also usually have other tell tale symptoms though. However, in the beginning stages of most AI illnesses, the main "big" symptom(ie butterfly rash, etc) hasn't shown yet. Does she have any rashes, swelling of the joints, odd colored tongue/hands/feet/etc, or is there any one symptom that outweighs the others by a long shot? Forgot to ask if she has very flexible joints or any weird skin issues(easy tearing, rashes, weird scarring, almost see through)? Post edited by: hatbox121, at: 06/22/2012 08:16 AM Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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broken Posts: 9223
Group Leader
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I know so vage wasnt I .. I asked her to get on and look at your questions.. she goes Tues. to the reumie again.. she did have weird illnesses happen to her..she had infected taste buds, didnt even know that was possible but it happen... so really the sed rate doesnt detect anything on its own, I never had asked about sed rate does anone else have one not normal we all have alot to give if one gets the help then some of this suffering is worth it..
remeber I am not a doctor I just say what I think |
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shayluna Posts: 306
Member
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My sed rate is normal, but my rheumie still says I have fibro. He ruled out inflammation and some of the other "scarier" diseases with my last round of blood work. I'm glad she goes to the rheumie again soon. Hope all turns out well at her appointment. |
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hatbox121 Posts: 10493
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Sed rates in FM are generally normal. A sed rate basically goes higher in inflammation. Since fm is not an inflammatory condition it's normal. A sed rate in itself is not diagnostic of any one thing. You also didn't list any other testing that she's had. If she's had and which types of thyroid testing(some are better than others), ss-a or ss-b, an SLE panel, RF factor, ANA, Lyme test(which one), cortisol levels, is the CBC normal, metabolic panels all normal, etc? If they are stumped its time to see someone else. If she doesn't feel comfortable listing it all here she can pm me and I'll see if I can figure out any suggestions since she has no direction at this point. A listing of symptoms would be helpful as well. You'd be suprised at how many small things can change a whole direction. Things we don't realize or think is important. If that doesn't help, I'd suggest getting a second opinion, doing research(particular emphasis on any odd or big symptoms), perhaps going outside of rheumatology to either an endo(if thyroid or other endocrine illness is suspected like adrenals, pituitary, etc) or genetics if it's truly an odd case. If infections are often, severe, or odd(not just one odd over a lifetime but several odd unusual ones) perhaps an immunologist would be an idea. I hope she figures it out. I will add that when you have two conflicting opinions often insurance will pay for a third opinion without an issue and is a wise choice. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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hatbox121 Posts: 10493
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Oh another thing is bowel habits. Several of the IBDs(inflammatory bowel diseases) can have joint, skin and other organ involvement beyond the intestines. They can mess with a sed rate as well. Also any X-rays or MRIs show any abnormalities? Particularly in the spinal or hip area? Any symptoms of dry eyes, dry mouth or swollen salivary glands or lymph nodes? Post edited by: hatbox121, at: 06/22/2012 10:35 PM Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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