[Shewarrior]

Frustrated with doctor and RSD. So my pump has been in for 8 wks., and what a journey. I M healed from surgery, and mort importantly, I am off all oral pain meds (not a walk in the park). Yesterday, I went to change the med in my pump because morphine had made me so nauseous and weak (I lost 10lbs). Now I'm on dilaudid and buprivicaine. While in his office, I asked for the same Triple Phase Bone Scan I have asked for 3 times.
He went on. About how no matter what it said, our treatment would be the same. He had given me uplifting advice like this before. "no cure", "progressive", bla bla bla. I told him that people are noticing my skinny legs from the atrophy and as a patient, I needed to know where I was in this RSD process. He finally agreed to order the test, but also said my insurance may not cover it because it was not necessary for treatment? What? I asked if he could recommend a physical therapist that works with RSD patients to regain some muscle, but again he doesn't know.
Does anybody have this experience with their doctor? Does anybody know an RSD doc in Indiana. I just hope this new med combo will give me the ability to get out of bed more. Thank you for your help

[Nanc]

Originally Posted by Shewarrior

Frustrated with doctor and RSD. So my pump has been in for 8 wks., and what a journey. I M healed from surgery, and mort importantly, I am off all oral pain meds (not a walk in the park). Yesterday, I went to change the med in my pump because morphine had made me so nauseous and weak (I lost 10lbs). Now I'm on dilaudid and buprivicaine. While in his office, I asked for the same Triple Phase Bone Scan I have asked for 3 times.
He went on. About how no matter what it said, our treatment would be the same. He had given me uplifting advice like this before. "no cure", "progressive", bla bla bla. I told him that people are noticing my skinny legs from the atrophy and as a patient, I needed to know where I was in this RSD process. He finally agreed to order the test, but also said my insurance may not cover it because it was not necessary for treatment? What? I asked if he could recommend a physical therapist that works with RSD patients to regain some muscle, but again he doesn't know.
Does anybody have this experience with their doctor? Does anybody know an RSD doc in Indiana. I just hope this new med combo will give me the ability to get out of bed more. Thank you for your help

So sorry you are having these difficulties with your doctor, they can be VERY frustrating for sure! While I have not experienced this exactly with my current dr, I have with ones in the past. Yours is correct about the triple-phase bone scan though. Mine was completely normal in both hands but there was no doubt that I had it, now it has spread from both hands, up one arm, in one leg and one foot. It originally started in my face almost 21 years ago. Personally I would not have any more tests than I had to, some are just inconclusive and too expensive. Your insurance covering the test just depends on YOUR plan. They might pay and they might not since it is not necessary for your diagnosis.

I can't help with your finding a new doctor since I am in VA, but if you are not getting the results you need then you should seek another opinion. You have to be comfortable with your treatment and your healthcare provider.

I too hope your new med combo will help you!!

All the best,
Nanc

[Shewarrior]

Its so hard to know what to do, but thank you for your advice and wisdom. It was the feeling of cold from my knees to toes,that made me go for this scan.I'm so confused. Wish me luck

Originally Posted by Nanc

So sorry you are having these difficulties with your doctor, they can be VERY frustrating for sure! While I have not experienced this exactly with my current dr, I have with ones in the past. Yours is correct about the triple-phase bone scan though. Mine was completely normal in both hands but there was no doubt that I had it, now it has spread from both hands, up one arm, in one leg and one foot. It originally started in my face almost 21 years ago. Personally I would not have any more tests than I had to, some are just inconclusive and too expensive. Your insurance covering the test just depends on YOUR plan. They might pay and they might not since it is not necessary for your diagnosis.

I can't help with your finding a new doctor since I am in VA, but if you are not getting the results you need then you should seek another opinion. You have to be comfortable with your treatment and your healthcare provider.

I too hope your new med combo will help you!!

All the best,
Nanc

[Nanc]

Originally Posted by Shewarrior

Its so hard to know what to do, but thank you for your advice and wisdom. It was the feeling of cold from my knees to toes,that made me go for this scan.I'm so confused. Wish me luck

I am sure you have your reasons for requesting the scan, hopefully it is the right test to give you the answers you are looking for. Is it scheduled yet?

I do wish you luck! Dealing with RSD is hard enough, you don't need difficult doctors on top of it!!

Nanc

[Shewarrior]

I do have it scheduled for a couple weeks so I have time to decide what to do. Thanks for ur help. I appreciate it.
Lisa

Originally Posted by Nanc

I am sure you have your reasons for requesting the scan, hopefully it is the right test to give you the answers you are looking for. Is it scheduled yet?

I do wish you luck! Dealing with RSD is hard enough, you don't need difficult doctors on top of it!!

Nanc