Thanks Daniella
I have been to Hookins 3 times and they couldnt figure out what was wrong with me before i got the RSD diagnosis from my Primary care doctor.
I saw their allergy and immunology dept, he Rheumatology dept...and one other dept i cant remember.
I was also seeing the top dr in Rheumatology for 2.5 years and he didnt know i had rsd. He said he gives up on me so i left his practice...then 3 months later when i was diagnosed...i called him to tell him what i had because he had tried so long to figure it out...and he was like "no you dont have RSD you only get that on your extemeties...and i said no you can get it internally too...and he was mad at me, like who mi to tell him that he is wrong! it made me sad that he treated me that way...so i just said good bye and never called him again.
there is a dr at GW hospital who is known for working with RSD , but her main thing is ketamine infusions which i dont want. i took it orally for about 6 months and I hallucinated non stop...it freaked me out too much!
I am praying that God will find me the right doctor to help me with the Mannitol IV very soon.
Blessings to all
Lori
Quote:
Originally Posted by daniella
I just responded to your neuro post.
I know when things get so bad one may try a procedure etc that may not be the best for them because of being so desperate. I would never in a million years get any type of plastic or surgery even like botox which some use for pain. I think there is too much risk in damaging other nerves or flaring the current rather then settling it down.
I think it is a good idea to see a neurologist. Have you also thought of maybe going to a hospital where different specialties look at your condition like Mayo or John Hopkins?
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