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Old 02-28-2010, 03:20 PM
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Mycah Mycah is offline
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Join Date: Oct 2009
Posts: 84
10 yr Member
Mycah Mycah is offline
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Join Date: Oct 2009
Posts: 84
10 yr Member
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Quote:
Originally Posted by bobber View Post
Hi Mycah
Unfortunately there is no specific diagnose {DX} for RSD, for which makes it hard for the patient to get the immediate care and correct essential care they despepertaly need.
The majority of DR's go by the patients outward appearance of the disease,they seem to want to see before they believe,,A good DR will pick up on it before the outward symptoms pop up,,its my opion thats ,that is when we need aggressive treatment,
There are people who have RSD that dont remember what caused it,,it has been noted that alot of time people do minor injuries that they dont remember because it wasnt a big deal at the time,Like twisting an ankle,for which is a very common way to contract RSD.
In my travels,,Ive found that ortho DR's are less informative of RSD than a pain management DR and at times ,better yet a Anestiologistis a good one to go to as well,,but as for a GP and a internist, and podiatrist,ive had no luck,,Your Dr can order alot of tests,[thermograpy,bone scans ,eeg,emg,mri e-rays,bloodwork to rule out autoimmune diseases ect,,,,but it is my opinon ,that at the end of the day,,He can DX you with RSD but another DR will say you dont have it,Because none of them are conclusive enough to DX for RSD,,,{ But all these tests will be accumulative over a peiod of time to help with the DX,,,,,,,,,back to square one,,there isnt one specific test to stamp on with two feet that this patient does have RSD,,,,and it is a stumbling block for us all,,crucial time passes by waiting to get a DX , or to get a DR on board to believe us and better yet,to know what to do about it and it takes a trained eye to recognize what stage your in to find out what will work for you,,But even if you see a real Good educated DR who knows RSD,,Not all meds or treatment will work for you,,It isnt a cookie cutter disease,,so Its a crapshoot on what will work for you,{ trial and error,,,},,,It is not uncommon for a RSD patient to have more than one DR,,it wont offend him to incorperate another DR,,most of us here have seen tons of them,,you need to find what works for you,,,If you are looking for a DX on paper in the DR;s dictation to have in hand,,,My choice is go to either or both a Pain management and a Anestiologist DR.....
I hope and pray that you dont have RSD,,burning back pain can come from muscle strain and tears,,And Im not telling you to dump your ortho Dr,but if you do have RSD,My gut feeling says you will be seeing a boatload of DR;s in the long haul,,,,,,best wishes,,,,bobber
Thanks bobber,

Yeah, I'm just wishing for that Good Dr who knows RSD.

I've had a colonoscopy, MRIs of brain and complete back, CT scan of abdomen/pelvis, EMG of arms/hands, eye test for Multiple Sclerosis, a lumbar puncture and extensive lab work. Doctors have ruled out colon issues, mini-stroke, multiple sclerosis, rheumatoid arthritis, lupus, thyroid issues and fibromyalgia.

My sense of smell/taste/sound is hypersensitive, thin and dry skin/nails/hair, night sweats, feet/hands sweating, feet/hands freezing cold, a couple of hand blisters, blah, blah, blah. In the last month my arms and legs feel as if they are burning and clothing hurts to wear. Certain foods/drinks are making my skin worse and am trying to avoid these with a passion.

I've seen two rheumatologists, four neurologists and a psychiatric nurse. Last week I started at a pain clinic with a board-certified anesthesiologist and he's working on some disc bulges with epidurals right now. He did say that if these don't work we'll start from scratch...next month. He did say to have my neuro look at the 'lesions' I'm having. Have a follow-up with my neuro tomorrow so I'm just trying to gear up for it.

Thanks for the straight scoop from your perspective.
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