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Re: I have had full body RSD for 5 years

Re: I have had full body RSD for 5 years

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Posted by Razzle on November 24, 1999 at 22:23:38:

In Reply to: I have had full body RSD for 5 years posted by Rebecca on November 09, 1999 at 13:27:00:

Hi Rebecca,

I'm so sorry this happened to you. I was in a similar situation, except the first doctor I did see did suspect RSD just never told me he did - he just told me I had "metatarsal inflammation" or a "possible fracture" but bone scan & x-ray showed no evidance of fracture (but did show evidance of RSD) and to go see either a rheumatologist or neurologist. 2 years later, the pain stopped me from working at all (I rented a wheelchair, even, to see if getting off my feet completely would make the pain stop but it didn't) so I started looking for help on the Internet and someone emailed me about RSD. Got my diagnosis after going to Florida to see Dr. Hooshmand. I definately agree awareness is key to stopping this horrible disease. See http://home.beseen.com/community/razzle00/rsd.htm - I have some RSD awareness links on there. Also, Dateline NBC is doing a show on Dec. 8th about RSD, and 8 or 9 RSDers will be on the show!! Tell everyone about this - watch Dateline on Dec. 8th!!!

Have a happy & pain-free Thanksgiving.

Take care,

-Razzle

: I am a 31 year old mother of a 7 year old daughter. For most of her life I have had RSD which started after a spine surgery because of a careless driver who hit my car head on. How do you even begin to talk about this monster who is called RSD. For 2 years and 12 surgeries later due to malfunctions of different parts of my body some Dr. finally recognized I had RSD. But then the bad news came when he said we could have cured you if only it had been diagnosed within 6 months. Unfortunately by that time RSD had spread throughout my entire body. The only thing my Dr. did no was that there was nothing I could do and it was a rare thing to have happen (he didn't even know it was a disease). All these symptoms I was having he didn't know the origin of most of them. I lived in the dark until a year and a half ago when I got a computer and had access to all these sites regarding this thing that had been torturing my body and mind for almost 5 years. Every symptom I had was right there! I have lost 15% of my bone density which also has involved my teeth and gums, blisters on my skin, horrific burning pain, illnesses that don't heal, sleep which is one of the hardest things to get,sweating all day so that I have to change 4 or five times a day and dry my hair just as much, but while I am sweating my hands and feet are like ice cubes(how are you supposed to warm one thing and not the other?). My daughter crys and says that if I die she wouldn't want to live without me and OHHH my God I want to be here loving her and my husband but I get so scared because this disease just keeps getting worse. I wish that there was more outlets to inform the people and Dr.'s what kind of monster this disease is and more funding to find a cure. If anyone out there can or knows of anyone who could help me find a way to enlighten as many people as we can. I don't want to have anyone else get this disease and it's mostly curable within 6 months of onset. If someone had only known when I was in the position. Please if anyone wants to talk about anything I am here and I will help all that I can. I will say prayers for all of us who are in for the fight or our lives. We have to fight and we have to win! It is the only way that we can have hope! God bless all of you and your family's. Keep the love in your heart..Rebecca.




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