New Diagnosis and Progression

    • July 24, 2014 at 3:39 pm

      I am new here, so sorry for the cross-post from the “main” forum here as well.

      My sister (early 40s) began to experience symptoms off and on a couple of months ago (tired, weakness, headaches, etc.) She finally was tested yesterday and admitted. She had her first IV IG yesterday. The Dr. said he expects her to remain in hospital and receive treatment and on the 4th day he will assess.

      Can you point me to resources that discuss the likelihood or commonality of progression, that the symptoms or effects might get worse before they get better? E.g., she can walk now and is not paralyzed and does not need assisted breathing. Might the disease progress during treatment and she might end up with paralysis, and needing assisted breathing? If so, what can we do to prepare, and treat?

      Do you have any information about Orange Regional Medical Care in Middletown, NY and/or medical professionals?

      I am across the US and there is no family close by right now. (She has two young children.) What can family members who are geographically remote do to assist, advocate, etc.?

      Any other guidance would be appreciated.

      Thank you.

      Matt N.

    • July 27, 2014 at 3:55 am

      Hi Matt,
      progression seems to be widely variable: some people start feeling weak in the morning and are under the breather by night, others may never reach that point. I, for one, was never paralyzed, though my motion was seriously compromised after a long, hot bath, around a week after the supposed trigger (a sinusitis crisis, apparently).

      I had progressive pains throughout 3 weeks and difficult breathing from the 2nd to 3rd week, but nothing past that. In any case, medical procedures usually include preventive hospitalization and I think it’s a good idea to have someone always by her, in case things worsen. I recently knew of a woman in my city that was apparently recovering, then went home for the weekend and had a breathing paralysis while there were no one near. I wouldn’t want to take the risk.

      As for your other questions, I guess others can help better, as I was a lucky case.