Quote:
Originally Posted by daniella
Thank you all for your feedback. It is nice to hear positive stories and I am so happy for you that got relief.
I will start by saying since I have had rsd for 4 years and been to a lot of rsd specialists and tried many treatments I have become very skeptical of everything. My huge fear is getting worse, a spread or a new problem. It is bad enough when one tries treatment and does not help but then when you add more to the already well as you all know it is horrible.
My reason also asking about which doctor is I am thankful that I can go see anyone if I choose to do this. I know Dr S has a long wait list and to be honest I hear sometimes for the procedure he is not even there and that I don't like. I think the doctor you see should be there during the procedure. Also it is confusing about which is more appropriate in terms of ip,op,dose,etc.
Dee I'm glad you are doing better. Do you do special PT now?
Sandy I hope you get approved asap. Such extra stress you have to face on top of the already. I can so relate to the sound sensativity. I have that so badly and that is an understatment. I am happy though for you that you have found a treatment that works
Betsy thank you for those websites. I am going to look at them. Where did your daughter have treatment? I hope the boosters help her.
Thanks again everyone
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I am so very thankful after an infusion and I get to be more like my ole self, but I also have to go back for infusions. I will be going again within the next 2 weeks, and I consider myself very lucky to be able to. I'm very careful after infusions in that I don't do things that could possibly hurt myself such as riding roller coasters ( gawd I used to love to ride) I also don't ride my Harley anymore but I still have her, and keep thinking someday.....somewhere on a desert highway....sorry old song
The medicare advantage insurance I have has a program called Silver Sneakers which gives me free membership to any gym in my area. I do go to Mad dog and I only do what I can and the staff are very much aware of my condition and are quick to help or offer advise. Now I'm not silver and I can't even keep up with my elders, but they sure keep me smiling when I'm there and I have the utmost respect for them.
Dr. L's infusions are done in a hospital setting, you get a bed and you are allowed to have someone with you. He even lets the person you bring know how things are going, where to go to get the rx filled ( yes, you do take oral ketamine for 7 days ( I think, memory is not so good these days) afterwards. I get to see him throughout my stay although I sleep through most of it and really only remember seeing him when I first get there. We keep in contact via email and I really couldn't ask for a kinder, compasionate doctor.
Hope my info helped and made sense, and if I can answer any other questions, please do not hesitate to ask
Dee
