Doctors can really ###@## make me mad

    • Anonymous
      October 17, 2006 at 8:58 am

      Hi everyone, we went to the doctors yesterday and Williams so called team saw him. The good news is that they can’t believe how well he is doing. All his strength is back, still no reflexes though. Like I told you before they can’t come to a consencis on what it is the two docs that is. One says mitochondrial the other says CIDP. So again I left with no answers. Basically I was told that be glad he’s getting better and hope tomorrow is always a better day. Well thats allot for a mom to go on. Thats what I need to know is what about tomorrow, do I give him a flu shot, what triggers what ever this is so we can avoid it, is there a chance it will come back, will he continue to recover, I have a million questions but no one seems to be able to answer them. So frustrated. We did get a referral to a doc in another city who is suppose to be really good but again I am told that he is such a strange case we just don’t know what to do and there is no more tests to find out and no other meds to help the problems he has. I am left confused frustrated and sad.

      Colleen:(

    • Anonymous
      October 17, 2006 at 11:31 am

      Colleen,

      DON’T let them give him a flu shot. Many people have reported getting GBS from the shots.

      Keep searching for a doctor willing to take on challenging case. You still don’t have a diagnosis. There are so many neurological and auto-immune conditions that it often takes real persistence to find out what’s wrong.

      Now that he’s getting better, it’s tempting to count your blessings and go on your way. Don’t do it because you and your son need to know what this is.
      It could have implications for his future health.

      Best wishes, and glad to hear he’s getting better.

      Suzanne

    • Anonymous
      March 15, 2007 at 8:37 pm

      I understand what you mean about the doctors! As a parent we not only have the worry of not knowing what is going on with our kids but the stress of not being able to ‘make it better’. If only a kiss and a band-aid would do the trick.

      Best wishes,

      Jo

    • Anonymous
      December 21, 2009 at 12:43 pm

      [QUOTE=colleendm]Hi everyone, we went to the doctors yesterday and Williams so called team saw him. The good news is that they can’t believe how well he is doing. All his strength is back, still no reflexes though. Like I told you before they can’t come to a consencis on what it is the two docs that is. One says mitochondrial the other says CIDP. So again I left with no answers. Basically I was told that be glad he’s getting better and hope tomorrow is always a better day. Well thats allot for a mom to go on. Thats what I need to know is what about tomorrow, do I give him a flu shot, what triggers what ever this is so we can avoid it, is there a chance it will come back, will he continue to recover, I have a million questions but no one seems to be able to answer them. So frustrated. We did get a referral to a doc in another city who is suppose to be really good but again I am told that he is such a strange case we just don’t know what to do and there is no more tests to find out and no other meds to help the problems he has. I am left confused frustrated and sad.

      So sorry to hear about your difficulty with the doctors….I completely understand. i have recently been through the same thing with my own docs, and a specialist who was even worse! Ended up in the ER after specialist said I was fine and just needed splints and cortisone injections. Turns out I need to be doing IVIG to get any relief. Hope things work out with new doc. Hang in there, but be persistant and stand your ground. Best wishes….