Imahotep, your right, I have at times had the exact situation you described. I too have been told I do not have the "classicl" signs of RSD- but I have been diagnosised with full body RSD by the three of the top doctors in the world, Dr.S, Dr. Rohr in Germany and Dr. Kirkpatrick- so there you go- we are all different. The monster affects everyone differently.Wish you didnt have it too. CZ

I am not sure where to post this but this seems a good place. I stopped coming to the forum for about a month after being told I did not have RSD by the Dr. giving me a nerve block. I went to the same guy that gave me the first 2 blocks that I had. The first was in my lower back not helpful, the 2nd time was right in my L leg which is where my RSD is located. I talked with my pain Dr. about sending me again as nothing was working for the pain. When I went the Dr. doing the block said he was going to do the lower back again. If I had no relief this time it meant I did not have RSD and that I had neuropathy instead. Well the block happened and nothing came of it. He was very excited to tell me I did not have RSD. I left the hospital very frustrated. My pain dr was on vacation so I did not have a follow up appointment for a few weeks. I was getting depressed thinking what am I going to do now. Things are not getting any better and now I am not sure what to believe. If I did not have RSD great. But the liklihood was small in my opinion. So I didn't think I should write on this forum during that time if I did not have RSD out of respect for you all. Well a visit to the pain dr. I have RSD no doubts. She said I have been following your case for two years now and I have seen how things change for me. She said she has a lot of experience with RSD. So she took a look at the med list again and upped the nerontin to 3=600mg a day. My last appoitment I asked her about it because I am not thinking right at work and it is causing problems. In this state I think I am doing fine and than there are things that happen that show me I might now be thinking okay in writing reports following instruction, or hearing the instruction right. I also have a hard time verbalizing sometimes. Most people would not know anything was wrong, but people around me everyday see a difference. She is taking me off of the neurontin and going to replace it with Lyrica.
The day of my appointment I was driving and had an attack of vertigo. I was lucky to be able to pull off and park my car. We called 911 and they took me by ambulance to the hospital. I was there for about 20 hours. I got sent home but could no longer walk without help due to the dizziness. I was out of work for 11 days. My boss is very angry with me. She doesn't like the absentism. I couldn't help it. I need to leave this place of employment. I had gotten a note from the pain dr. that I could only stand 5 min. at a time. I do job coaching. So this last week i was sent to job coach a person that works 4.5 hours a day in a warehouse. I can sit sorta but I have to be with them shadowing them. This person is Developmentally disabled so I have to help him in all of the tasks. I take the chair and sit when I can but I am walking the warehouse and standing with him. This seems to be fine with my boss. Urgh. I gave her information about 6 months ago on this disease and had her watch the tv video. She didn't seem to be too responsive about it. I just wanted to educate her. That you may not see it but it is there. The past week I have been on an 8-9 pain levels and nothing is working. I do all my tricks. I don't know what to do next and feel the frustration as you all have described.
If you were following my story I did graduate on June 21st with my Master's Degree in Special Education so I am now a certified teacher. That is brining on more anxiety though on how I can do that job. I can't decide if working with pre-schoolers is a better gig than working with older students. They each have a fair amount of walking and stooping bending with the position. I think I want to do some admin work and just write up student plans. IEP's.
Thanks for the vent and I won't not post due to some stupid dr. telling me I don't have RSD again. I know better now and I think most of us have gone through this misdiagnosis stuff in our journeys.

Oh and Ali thanks for being you. You inspire me as well.
jo

Sorry to say this, well not really, Iffynah, but the OT you have that said;"You don't have the coloring of RSD"!! Well, he/she is off their "Rocker"!! What color are you supposed to have?? rainbow coloring?? Geezzzzzzzzz... these people that say that, be it OT, MD's, PT, nurses.. or what have you, don't know and are so ignorant of this disese of RSD it makes me ill! mad as heck too!! Take care!~Love, Desi