Just checking in, no change in my condition

    • Anonymous
      December 7, 2008 at 2:54 pm

      I have not been here writing for ages, just reading occasionally. I so miss all the caring messages. History:

      I was dx in May 2006. Spent time in hospital and forever in PT. My Neurologist left the area Nov 2006 and I have been bouncing around since. I had IVIG for over a year and tried about every drug with each new Neuro. My paralysis which was toes to hip improved to toes to knees and has stayed the same with no IVIG and now no drugs. I am in a wheelchair, two drop feet and sadly 24 hr/ pain.

      Where I really got lost was in desperation of not being about to find a Neuro. in this area, I went to clinic in MN Feb. 2008. After 4 grueling days of tests and torture:rolleyes: I came away with a dx of neurosarcardosis. This really frightened me and thought I was done for. None of the drugs–Lyrica, Cymbalta, neurontin, etc. seemed to be helping. They advised me to continue all the drugs and go to pool therapy after the pain decreased. Now me being almost 70 and a boat person, I dont care to be IN the water and the pain never decreased.
      I had a call (after a worried letter from me) from the Mayo Neuro and he said it is just POSSIBLE Sarcoid and not too worry unless something happens.:confused:

      Not a thing has changed, my condition the same with no treatment. My internal med doc has no answers, though has tried a few drugs which didnt help. So that is where I am. Dont know if right or wrong, but I am not ingesting any drugs nor going for IVIG- my last one was Sept 2007. I stopped coming here because of the Sarcoid. scare, but his other dx was polyradiculoneuropathy which brings me back–right? I am a bit depressed without the Cymbalta, but have adjusted to zooming around in my power chair, the care of a wonderful husband, and try to ignore the pain.

      I promised an update,tho not good, not bad either. Wishing you all a wonderful holiday season.
      PS to Stacey, if you read this REST. Bye for now, Regina

    • Anonymous
      December 7, 2008 at 7:12 pm

      Hi Regina,
      Just wanted to say hello and welcome back. So sorry for your struggle. Sounds like you are dealing well though. Glad to hear from you.
      Be well,

    • December 7, 2008 at 11:30 pm

      Hi Regina,
      Nice to see you back. no matter what the dx, I hope you stay. We like you no matter what you have. I don’t know if you remember me, but we spoke about South Dakota, as we had just returned from vacation there and then Kevin was dx. Come back soon!
      Dawn Kevies mom

    • Anonymous
      December 8, 2008 at 1:07 pm


      Hi sweety !!! I am so glad to see you back. I’ve thought of you often. So sorry to hear things arent better for you…but glad things arent a whole lot worse and that dx may not be, is that right ?

      Rest ? Who me ? My dear, I do try. Yesterday I slept until 11a. I dont know how I did that b/c my hubby was so sick this weekend. I took him the ER this morning and he has a bad case of strep throat. I took him home so that he can sleep and came to work. I came in b/c I’m afraid either I’ll get it or Connor will and I’ll end up calling in again.

      I did the ivig Friday…no probs to mention. Hand still burning at night except for one night. Going to the aggressive dr tomorrow.

      Are you getting snow up there ? We’re in a storm watch with not much snow predicted…mostly wind.

      Stay in touch.

      chin up !


    • Anonymous
      December 8, 2008 at 8:38 pm

      It was great to hear from you Regina! I wondered how you were doing. Those docs are just as perplexed as we are sometimes!! Just gotta take it one day at a time 🙂