Friday, June 25, 2010

Hi Ho, Hi Ho, It's off to the Doc I go.....

Doctors Appointments... Good Times.

Well I had a neurology appointment for a follow up NCV (nerve conduction velocity test).

Apparently my last test was abnormal with findings of diffuse sensorimotor demyelinating polyneuropathy, In other words, the test showed that some of my nerves were either absent or slow.

Autoimmune diseases do not discriminate. It is most definitely an equal opportunity destroyer. What seems to be happening is the autoantibodies are now feasting on the myelin sheath of my nerves causing neuropathy.
Basically I am a walking, talking, Golden Corral Buffet.

But the good news was my repeat NCV showed some improvement!!

I am not sure if I shared or not, but I seem to be having some issues with malabsorption. I have been struggling with a vitamin D deficiency, as well as, a fluctuation B12 deficiency. Because the issue probably lies within my small intestine I was given B12 injections to administer weekly to correct the deficiency. I was also given HIGH doses of vitamin D supplementation (50,000 units daily) to help correct the vitamin D levels.

A vitamin B12 deficiency can exacerbate or even cause neuropathy and/or nerve damage. It seems that my weekly B12 injections apparently caused some improvements to show on my NCV. My last lab test showed a normal B12 level so I had actually halted the injections for a while, but he advised that with my issues and with the nerve damage, that I should continue with the injections indefinitely - even if my lab levels are normal. Some of the damage is already done, but it seems there is hope that ongoing B12 may halt or improve some of the other issues.

I was advised that with the Big S, nerve damage can occur in the extremities causing numbness and pain. The damage can progressively worsen and lead to ulcerations. Who Knew?

Anyway - all I have to say, is don't sweat the small stuff and if all I need to do for now is grab and stab..Bring it on baby!

Life is Good ~

1 comment:

  1. UPDATE:
    Repeat NCV showed a halt. or if I want to show off and use my Sclero-Cabulary....a SCA-LT (scleroderma indusced screetching halt!).

    My legs still sometimes "give out" as do my arms (like in Yoga when we were all silent doing a pose until my arms gave out and you heard a loude BONK verbriate through the yoga room....good times!)

    Anyway - Now the doc is thinking monthly IVIG injections at home. 8 hrs each for two days through IV - so if y'all have any good must see movies let me know...I'll have about 16 hours to kill pretty soon!! : )

    Peace and love ~