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Mayo Clinic update (kink coming back, I promise!)

30 Aug

After two weeks at the Mayo, here is a fairly comprehensive look at the physical state of the dragon. D/s, and far more so play and sex drives, have been subdued the past few weeks. But Jalan and I have a solid enough framework that we’re managing and looking forward to resuming sexytimes. There’s not a lot of room for “fun” right now. We are going out of our way in the downtimes (including her birthday yesterday!) to do things that connect us. It’s tough, but we’re making it.

So, the physical. Cardiology and Neurology have both put me through the wringer. This has resulted in a lot of rule-outs, no rule-ins, but a number of suggestive findings. Last weekend was rough, when the cardiologist gave us a cliffhanger Friday afternoon, but this weekend looks to be more restful.

One of the tests Neurology ordered as a long-shot came through with a significant result, which may suggest doing some genetic testing for a lesser form of an enzyme deficiency. We haven’t heard yet if the neurologist has directed this, but we see Internal Medicine Tuesday morning and can bring it up.

So the two major leads we have are that and a constellation of blood/exercise tests from Cardiology consistent with a mitochondrial disorder. The definitive test for that requires a muscle biopsy, which would have to wait, possibly until next Summer — the risk/reward is poor while I’m on strong anti-clotting meds from the stent last month.

The enzyme deficiency would probably be at least somewhat treatable. The mitochondrial disorder, less likely, but it would help us plan management approaches to arrest and possibly partially reverse the decline.

Whether or not Internal Medicine has anything concrete to suggest, we’ve gained valuable information, if nothing yet as definitive as we’d hoped. One of the big benefits of what we have found is that — with the previously suspect disorder ruled out — there is no longer a likely hazard to exercising. The other big benefit, of course, is going through this process in 2-3 weeks, instead of 1-2 years.

When we’re home, I plan to ask my cardiologist to send me to rehab so that insurance will pay for me to work with physical therapists and design a movement/reconditioning program that I can tolerate — again, to try to stop and/or reverse the decline of the last six months.

My family members here have been wonderful hosts, making things so much nicer, easier, and more affordable. But we’re missing home, the four-footed pets, and our own bed. We should know more about timing after Tuesday.

 
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Posted by on August 30, 2013 in Health

 

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