Today's oncologist visit

First thing out of his mouth, he apologized for not following through on the referrals to the CRPS specialist and the appointment at Duke.  His excuse:  in the 2 months since my last visit, it was quite the ordeal to move his practice from one place to the other.  Quite a few appointments had to be cancelled with some of his patients, and they even had late minute construction issues during the switchover.  Still stuff in boxes laying around.  Certainly would explain the lack of action on my issues.  Guess stuff like that happens despite the planning they had done.

I now have an appointment on June 11th, with Dr. "S", that heads this specialty pain office and rehab center.  He is the only specialist in my entire part of the state dealing with CRPS and RSD issues, both complex.  What sucks, he opted out of Medicare, so any visits will be out of pocket for me.  I had to pay 200 bucks in advance just to have the appointment.  So I drove over there, and talked to their office manager and to a nurse, wanting to make sure it wasn't some kind of scam in disguise.  After talking, it seemed legitimate enough, and they are part of the St. Francis Health Systems here in Greenville.  The nurse said, just based on the little info I provided, that it very well could be a case of ongoing CPRS.  She said if it is diagnosed, and I don't do anything about it, I could soon be reduced to being in a wheelchair.  As it progressively gets  worse, and becomes harder to treat.

The doctor promised to contact the Urological/Surgeon expert at Duke, and will do a telephone consult with him in advance, to make sure that this doctor is the right person, and that he won't be wasting my time as what happened with Dr. "K" at MUSC in Charleston.  If I don't hear from him by Monday, I am to e-mail him directly.

Duke is quite a long drive for me, and I don't want to go there unless I know  the new doctor has been properly briefed about my condition and situation.

He wasn't interested in doing another PSA test for his own purposes, it was last done in December.  He said I could have one if I wanted one, so I agreed and they drew blood.  Should get results by phone by the end of  the week or early next week.  It's probably the last regular one I will be getting for awhile.  He told me again, that knowing it constantly, isn't going to change his treatment plan with me, and that it would only serve as a source of anxiety for me (though I reminded him that I never have PSA anxiety).  I will post the results, but after this one, I probably won't if any future PSA test are done.  He intends to order periodic CT scans as needed, and another PET/CT scan at the one year mark from the last one, which will be next February.

We talked about a few other issues, just to get it on record.  My meds were left as is for now, and he will wait to see what the CRPS specialist has to say, before considering any additional med changes.

Wasn't my greatest visit with him, for the first time ever, he seemed absorbed mentally in other issues, and his phone kept going off - which never usually happens when I am with him, but at least I got the most important matters taken care of.

david in sc

I found it by taking that out....I'll post it here for people to find in case you don't see this for a bit and then will delete this part out once it gets edited...

http://laurascrpsjourney.weebly.com/index.html

The photos can be found under the CRPS tab on the page and then CRPS photos....I'm hoping David, since you haven't mentioned any of your limbs /toes/fingers looking like this that if you happened to be diagnosed with this that you are in the very early stages.

Glad you found a good Dr. in your area who happens to specialize in this! I hope that you will be able to submit the cost of anything to Medicare directly to be reimbursed for any out of pocket expenses.