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Monday, November, 23, 2009
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Looking for some help for my boyfriend who has CRPS Type I (also referred to as RSD).

Destiny

Destiny

Monday, September 07, 2009
View All of Destiny's Posts
Treatments include medication, physical therapy, psychological support, sympathetic nerve blocks, and or spinal cord stimulation. He's done everything but the spinal cord stimulation. I think he's afraid the doctor will make it worse. He had a cyst growing in his arm. He went in because he thought th...
  1. RSD and or CRPS
    itbgct
    Monday, November 02, 2009 at 03:28 AM

    If you will go on the internet and Google RSD or CRPS, there should be an association number and web-site.  Several years ago, there were only 5 doctors in the U. S. who were considered the top physicians.  I went to one of those five on the recommendation of a top rated TMJ specialist who diagnosed me with the RSD.

     

    The neurologist that I saw probably should have been retired.  I was booked for one appointment, and we had to change all of our plans because he insisted that I stay for a week of treatments.  I thought I was in good hands and I followed his instructions. After the initial testing and etc., he started doing injections of prednisone.   I saw him for about 2 years, and I thought he prescribed medication too freely.  I got concerned and asked for copies of my records.  I took them to my pain specialist, and he found that I had well over a year's dosage of prednisone within one week.  He was highly alarmed, but there was nothing I could do by then.  Now, I have osteoporosis and last year lost 12 % of my bone density which showed up on the testing even though I am on Boniva. I am now to see an endocrinologist to talk about another treatment which is considered somewhat of a concern.

     

    This doctor was well published and nationally recognized as one of the leading specialist.  His patients all thought that he " walked on water ", but I could not tell any difference, and I was afraid to fill the scripts.  I showed them to my pain doctor and he told me not to have them filled.  They were taking one of them off the market.

    I am not trying to scare you, but I didn't ask the questions that I should have asked.

    He saw way too many patients and you would have to wait for hours past your appointment time.  Just please be very careful of who you choose and please ask about everything they want to do.  At one time there was a doctor in Philadelphia, but I never got his name.  Acupuncture has helped me with my pain.  I do not see anyone for the CRPS and RSD.  There is a neurologist I believe who does the ganglion nerve blocks on West Coast of Florida.  I've had warnings about having them done unless the neurologist does nothing but them.  Wish I could be more help, but I would not want anyone to go through what I did if this posting would help them.  I didn't have anyone to ask at that time and because he was published and well known, I trusted him. He is now retired and no need to worry about him any longer.

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