Quote:
Originally Posted by justwantanswers
I posted a few months ago searching for a dr in my area. I have been suffering for 11 months with no answers and the wrong treatment. Finally fed up I returned to the only Dr I trusted, because everyone other one only seemed to be concerned about the money from comp theyd be getting, not my health. Two weeks ago I went back to Geisinger in Danville. I wrote down a list of all the symptoms I experienced since they didnt all start at once but progressed each month. He lookd at it left and came back and said I beleive you have RSD and explained it, referred me to a neurologist and for another mri and bone scan. I went back today for my follow up, and it was confirmed RSD Type I. I am so relieved to finally have the right diagnosis and be able to start the right treatments. I will be starting pain management, and they were talking about nerve blocks. They are going to try a Dr locally but if I dont see relief they want to refer me to Dr Schwartzman. I have done a lot of research since one Dr hadmsuggested RSD but then retractd his statement. Im hoping to get insigt from others and what to expect from different treatments. I understand everyone responds differently but I would like some personal insight.
As much as I am relieved to have an answer, Im so beside myself. Im having a hard time accepting this, more specifically the fact that my life may never be the same as I was a year ago. I lost myself and Im afraid Im going to let this ruin my life.
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I am glad you were told finally and explained what it was. I was told just that I had CRPS / RSD Type II due to damage to nerves in my arm, sent to therapy, and that's it.
It is painful. Thankfully you are also in pain management. Depending on location, they may suggest cortisone shots which are supposed to last a couple months for nerve damage. (Didn't work for me, mine lasted a day due to my CRPS). Nerve block shots were great, they mad my pain go away totally for a day, sometimes as long as 36 hours or so, but I was limited to 6 shots. Intense therapy was done 1/2 hour after shots (trying to straighten my arm). My next stage was a Sympathectomy, as the spinal cord stimulator was denied by workers comp and we wanted to get this pain under control. (It is not a cure-all, but it did send my RSD into temporary remission for about 2 months!). Don't consider that unless there are no other options, there are side-effects big time... Water therapy can help also, for desensitizing and motion as the resistance is not huge. There are other treatments too, unfortunately these are all I have been through. Make sure you keep up with a GOOD pain management doctor and neurologist and therapist who will treat you long-term not short term. (mine all but neurologist have dropped me after 3 months, and I have never had a pain management doctor ever).
Many of the posts I have read here and other places mention other treatments also, but individual results will vary as well as being actually able to undergo these treatments. Private insurance seems to allow for many more options versus workers comp but don't stop trying and work with doctors to find treatments that work for you. YOU are in charge not everyone else, so if something does or does not work, tell them and keep trying. I also read that the "no pain, no gain" approach to therapy is wrong for us with RSD / CRPS Type II. You need to build up into things again according to the therapy research I have done.
There are many here also who have been able to try other treatments, hopefully you can try theirs with success!