I went off for my appointment at the hospital this morning. I am more than aware of how all this works so I had no hopes raised and accepted I would be given the brush off in some way.
There are words I never expected to have come from my mouth or keyboard, but here they are; The Professor was lovely! He was respectful, honest and straight forward. He made no assumptions but actually asked me questions about my wheelchair use and lifestyle. He did a short poor man’s POTS test and said that he tries to avoid sending people for Tilt Table Tests (for which I was so grateful!).
He says it doesn’t look like classical POTS as my BP goes rocketing up with my pulse. Pure ANS dysfunction or failure would cause Hypotension. I’ve read this so I knew what he was on about. I assume I have that narrow band of POTS where hypertension is part of it and that would be adrenal. I don’t know yet.
Next step is a 24hr ECG. I should get wired up in 4 to 6 weeks for that.
He noted the complicating factors for my tachy being how bad the asthma is and the very strong meds I’m on for that.
And of course he noticed the Amitriptyline. He’s not going to rush into taking me off that. He seems to know a few patients who need it for pain.
I asked him the question I am now going to ask every doc I see. Which camp are you in over FMS and ME – the “real disease” camp or the “all in yer’ead” camp. The man accepts that both FMS and ME are diseases we still don’t know much about. He pointed out that the same can be said for POTS. He would accept the limits to our knowledge rather than assume the patient is making it up or has a mental health problem.
With the complications I have he couldn’t promise I wouldn’t have to have a TTT in the end, but he’s going to work hard to find some answers and a treatment that can get my heart rate down.
As we were leaving the nurse who works with him said, “He doesn’t give up easily you know.”
WHoohoo! He even agreed with her!
I know there won’t be any easy answers. But at least I think I may have found a doc who actually wants to find some answers.