Neuro 12/20/16

Will went w/ me to my neuro appt this afternoon cuz they rescheduled it from tomorrow, on yesterday afternoon.  I remembered to get printouts this time. [Last appt: ]. I’ll have to add those later, head hyrts rite now

I think he was kinda hoping for some definitive reactions from the meds too.  I described at PT blog []. Since for the most part I *think* my arm has been better, he wants to stay on that med, Verapamil.

After that, he lost me.  there is another med but I can’t remember if it’s name.  The goal being to have a better management of all the symptoms to prevent days like today. [or nights like last night]. So at the moment “adding a med” but he said if it works, I should be able to get off some of the others.  So increase now, decrease later 

I about burst into tears in his office though cuz my head was hurting, so he suggested a “different cocktail.”. He said that I’ve tried aspirin before without adverse affects so he thinks aspirin-benadryl-Phenagran might help knock out these that kinda wake me up & take me down for the count.  This at “cocktail” least sounds like it’ll knock me out ;-). Oxy kinda works but I don’t react like most people so it’s really not best option & I’d prefer it not

I’m all for anything that’s not hardcore drugs.

I think this papwrwok ways reccommeded dry-needling too… so not sure PT gal was thrilled abt that idea & Xarelto but she has done it before so she had said she’d converse w/ primary neuro  earlier today, so maybe after couple visits.

Ordering an MRV of head & optic nerve ASAP.

He also said that he wants to talk to hematologist.  My hematologist will be thrilled about that cuz other neuro NEVER once returned his calls.  This has been discussed before, and I offered again [to do shots in stomach or whatever needed], he thinks I need to go off Xarelto, at least in the short term to run some tests.  One possible test is a spinal lumbar puncture… fun.  But ALL the previous neurologists & hematologists have suggested this test for multiple reasons, most of which I don’t fully understand but clearly they are looking for a specific marker in spinal fluid.

A side effect of the spinal tap could possibly be lowering the pressure on my brain, giving it some relief and possibly a chance for this chronic inflammation to “heal.”. kinda pushing a RESET button.

William asked a bunch of questions too, some prompted by texts from Jeff earlier, but he was on a roll and I’m glad he was here to “do the understanding” for me. One was about flying, can I fly in a plane? possibly but my brain might explode.

Just kidding.  He thinks I probably could once we get the pain & pressure managed.  And he didn’t say “if” he was very confident that”we” can, and… soon.

At one point, I held up my hand and said, “you lost me, I don’t understand, and I’m not going to remember and…”

“…I’ll type it all up for you, and call the meds into the pharmacy,  if you don’t mind waiting just a few minutes.”

I’m sure I ramble but 1) add some new meds, 2) schedule MRI/MRV

Will keep you posted

[NOTE:  OK the med is called: Diamox (acetazolamide)]

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