I had my appointment with neurologist Dr.Zo at Springfield today. He thinks I do not have Parkinson's but isn't prepared to go quite as far as saying I definitely don't have Parkinson's. He thinks what I have is Central Orthostatic Tremor. I have to say that I'm not totally convinced. It is a rare condition but he says he has often found it associated with blood cancers referred to neurology by haematologists, and thinks it may be caused by the myeloma treatment - possible side-effect of Thalidomide and Lenalidomide, although that doesn't explain some of the shakiness going back many years before myeloma. Be that as it may, the plan is:
I have a DaT scan at Broomfield (NHS). Dr.Zo works there as well so this should - as I rather hoped - give me a shortcut onto the NHS side of things, and I won't have to involve my insurance. It's another glow-in-the-dark one with a radioactive tracer that looks at levels of dopamine receptors in a bit of the brain responsible for motor activity. That should go a long way to confirm what sort of tremor I've got.
Treatment: probably beta-blockers to control the tremor, possibly gabapentin. Not the beta-blocker (Atenolol) that I took for years to help control blood pressure until we decided it was no longer needed. I've now been off all BP meds for a few years. Whatever he decides on (and after I've run it past haematologist Dr.Ch for possible interactions & complications) can be prescribed on the NHS, so no cost to me again.
Now I just have to wait for that DaT scan appointment to appear in the post...
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