Myositis

    • Anonymous
      August 29, 2006 at 2:33 pm

      I would like to title this “The Roller Coaster that never ends”

      I was dx in July 05 w/GBS – Then dx in May 06 w/CIDP – Then dx in July 06 with Diabetes – Now I am having blood work done for Myositis…..what’s next Malaria???

      I remember seeing some post about Myositis here before but can not find hide nor hair of it now….Can anyone help with how this may or may not be part of GBS/CIDP??? (and yes I have researched it on the web and know the common facts but unsure how this affects or has in common with GBS other than it can be treated with IVIG treatments)

    • Anonymous
      August 30, 2006 at 7:16 pm

      Hi Morrada:
      Myositis, (DM-PM-IBM), is usually dx’d by biopsy,(skin-nerve-muscle).
      I was dx’d with GBS in late ’94, then IBM in 2002, then re-dx’d with PM
      in 2004. My Rhumatologist (sp) is a joke and can’t even spell myositis.
      So I registered with the MDA and they sent my to a Neurologist who made
      the PM dx. He started me on Rituxan treatments and believe it or not
      I HAVE shown some improvements. (I’m not doing the polka–but I can
      tap my foot). Not too many folks get so many unkown autoimmune
      problems. We must just be lucky, (LOL)!!! As with GBS/CIDP, nobody
      knows for sure where myositis comes from, or how one gets it. And I’m not sure if cures are available for any of this stuff. With me the problem has
      been nobody can say for certain what the GBS damaged or what the
      IBM/PM has damaged. I’m coming due for my next 6 month Rituxan
      treatment, so I will see what happens. If you have any other quetions maybe I can help–maybe not. Take care and good luck…
      :p

Myositis

    • Anonymous
      August 29, 2006 at 2:28 pm

      I would like to title this “The Roller Coaster that never ends”

      I was dx in July 05 w/GBS – Then dx in May 06 w/CIDP – Then dx in July 06 with Diabetes – Now I am having blood work done for Myositis…..what’s next Malaria???

      I remember seeing some post about Myositis here before but can not find hide nor hair of it now….Can anyone help with how this may or may not be part of GBS/CIDP??? (and yes I have researched it on the web and know the common facts but unsure how this affects or has in common with GBS other than it can be treated with IVIG treatments)

    • Anonymous
      August 29, 2006 at 3:45 pm

      Hi there,

      Is the original diagnoses changing to each of the following ones, or are these added too the list? Once it was changed to CIDP, GBS gets wiped off the table because that’s what you really had from the beginning and just took time to bear it out, right? I’m not quite sure how that works. The other 2 though are in addition to CIDP, or 2 new hassles croping up?

    • Anonymous
      August 30, 2006 at 5:46 am

      Morrada the neuropathy in diabetes has features in common with CIDP. 15% of those with CIDP also develop diabetes.
      Myositis is a term which is sometimes used loosely, but it should be limited to the inflammatory myopathies such as polymyositis, dermatomyositis and inclusion body myositis. these can be suggested by electrical conduction studies and confirmed by muscle biopsy. They, like CIDP are thought to be auto-immune disorders. DocDavid

    • Anonymous
      August 30, 2006 at 7:29 am

      Thanks guys…
      Racer – yes CIDP is just Chronic GBS so yes it should be “wiped out”. My Diabetes is an adder to my CIDP and was hospitalized in July (when I found out I was diabetic) for almost 2 weeks (another long story for another time).

      DocDavid – As always…Thanks. We are doing blood work this morning and then another round of EMG/NCVs next week.

      I think ny Neuro is just ruling out things because of my fatigue any my filing for Disability (Private insurance not SS)

      Stephen

    • Anonymous
      August 30, 2006 at 9:49 am

      Stephen, you should have no problem getting disability. I got it the first time (not ssi). Just make sure you have all your drs on board and insync with all your health issues and you will be fine! Don’t stress about it-OK?! take care.:)