Week 6 cytoxan

    • Anonymous
      October 26, 2010 at 12:26 pm

      Well I have gone through 3 treatments now. This combined with weekly P.E. And Sumadrol (1gram per week)
      I think the spread has stopped,at least no new conditions.
      However there is no improvement at this point either. Numbness in feet,hands, face, gag reflex almost non existent, but spasms have slowed way down in chest.
      I am going in for a second spinal tap this Thursday and a full skeletal survey. The herpetologist has given me a thumbs up on my liver, so we are looking for another underlying root to my severe decline. All signs are showing signs of PAN which means I may have a tumor somewhere or a precursor to cancer. Last spinal tap showed protien levels 4 x the norm.
      One has to love this disease it is never clear cut.

    • Anonymous
      October 26, 2010 at 2:41 pm

      Wow Ric things continue to be complicated for you. Good luck in finding some answers. I have read something about the possibilities of a cancer somewhere causing symptoms but I’m not very informed on that issue. What is PAN? I tried without success to find something when you mentioned it. Good luck with the LP and the scan. Keep us posted please.

    • Anonymous
      October 27, 2010 at 12:14 am

      Parenoplastic autonomic neuropathy

      Just doing research now
      Theory as I understand it is that it attacks the axiom not the sheathes. I will no more on Friday.

    • Anonymous
      October 27, 2010 at 12:53 pm

      Thanks for the info. I just found one site that has quite a bit of info on PAN at emedicine, but I am still searching around for more info.

    • Anonymous
      October 27, 2010 at 1:52 pm

      Know not no….lol
      Going for a series of blood work today. They are also concerned about another viral attack but I have tested negative for hep c so they are trying to rule everything out.
      Since I first started this spiral in august I have to admit that I am more worried than ever. The gag reflex issue has me very scared and I am having problems swallowing protiens or starches like breads etc
      I am told thick soups and protien shakes are best. Thinner liquids , like watt make me gag as well
      Plus with the steroids I am moody.

    • Anonymous
      October 29, 2010 at 8:59 pm

      Hi Ric,
      How did your day of testing go? Did anyone leak any info. to you about what they were thinking? Hope your LP went well i.e. no crushing headache.