Quote:
Originally Posted by Littlepaw
Well poop. I am sorry to hear your edema is so resistant. This is probably a redundant question you have already had worked up but I am assuming they did a thorough vascular work up including Venous CT or MRA of the leg and abdomen? There are a couple of rare compressions that can occur in the abdominal area, especially in women, that contribute to one legged swelling. Are they certain it is all CRPS? If your docs are not a hundred percent sure of the cause it might warrant a look see considering the severity of your symptoms.
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Yes, all that was done early on actually. I've been to see 11 specialist and the workup was extremely thorough in every way IMO. After the normal vascular tests were done, they thought I had lymphoma in the pelvic inguinal region due to swelling and family history. I was sent to a general surgeon for pelvic mass and then to a vascular surgeon. I have thought of going back to the vascular surgeon to see if they had anything else to offer as to cause in the abdominal area. They think it's all CRPS but I think either it's got a lot of POTS involved or there is a vascular component they missed. Certainly some of it is CRPS because it's classic. My 3 phase bone scan showed blood pooling and changes consistent with CRPS in the leg. Sympathetic nerve block confirmed CRPS, etc. I for sure have CRPS in the leg. It's just so weird the POTS swelling would be so bad in one leg and the other zero swelling. Especially with the degree of heart rate increase I'm seeing just upon standing.
In some ways the swelling helped because every Doc took it seriously from the start. It just took a while to diagnose RSD because of the presentation.