Hi there,
I was diagnosed with CFS and Fibro and the fit was pretty good so I didn’t question it. I have been active in the CFS world since 2000. But POTS can be part of CFS and mine was getting worse so I finally gave up on the “experts” here in Houston that diagnosed and confirmed my diagnosis of POTS and went to see Dr. Suleman in APril.
He diagnosed me with EDS, gastroparesis, MVP and Tricuspic Valve Prolapse, some other autonomic dysfunction and severe balance issues that he does not think is POTS. So, yes, he pulled the pieces together and I think he is Brilliant!
Yes, I agree, many specialists are not thinking outside the box, they decide that if you have one issue, e.g. EDS, then you’re done – you can’t have anything else. Mostly, just very dismissive.
I have decided not to go to any doc unless they are a patient referral from another EDS patient. I have joined many groups/forums to make that happen!
I am also willing to travel as that will save me time, money and aggravation in the long run.
If there is any way I can help you, please let me know. You probably have more experience than I do but I am happy to try to help.
Marti