My sisters CMT Dr is Richard Barohn

    • Anonymous
      April 7, 2010 at 2:28 pm

      I think he was one of the Docs at the symposium in Chicago ?

      She sent an email to my neice to forward to me that said he would see me and that normally I’d need referred but b/c he gave her my name, he’d see me.

      Also, she said, that he told her that the reason I’ve had so much muscle loss is b/c of inactivity. Told her if she exercises, she’ll never need a cane. Also told her that her kids and grandkids would not need tested.

      This is cmt 1a folks.

      I think she’s full of it. But, whatever. I guess I appreciate her telling him what a lazy slob I’ve been for the last three years, etc. That’s just her tho…and, she doesnt have the decency to email me directly.

      I dont know if I’d want to see him. I know he’s awesome…but, he is HER doctor. NOt sure my insurance would pay out of state.

      just an update…still waiitng for my own appt.

      well wishes.

    • April 7, 2010 at 5:28 pm

      Stacey, check you private messages, give me a few minutes though.

    • Anonymous
      April 7, 2010 at 5:59 pm

      I have heard of him as well. Is he on the board of directors for the foundation? Maybe he has written an article for the newsletter or something. I think her is well thought of. He might not even think your sister is all that. You have such a nice personality that you could win him over in a heart beat. You have that sponge mentality and doctors love that. They love to teach you things and like when you ask good questions. I say go for it. Remember though that there are a lot of good CMT docs. Just google.

    • Anonymous
      April 7, 2010 at 7:14 pm

      Hey stacey

      He might be right, Carla (from this site) her daughter Emily is a friend of Ryan’s (we meet them thru this site and we actually went to Ft Wayne IN a few weeks ago to meet them in person) great ladies. anyways Emily is 21 also and Dr Lewis and Dr Shy at wayne State University think that Emily could have CMT also instead of CIDP and they told her as long as she wears her AFO’s all the time (not sleeping) and exercise she would not need a cane either.

      So since you had no idea and now you may have to use a cane, if you get physical therapy and wear your AFO’s all the time you may not need it for long. you could reverse some of the damage. ask lots of questions when you finally get to see your CMT neuro. Praying for the best!!

      Try not to let your sister get to you

    • Anonymous
      April 7, 2010 at 10:42 pm

      Hi Stacey,
      Dr. Barohn is on the board of directors for this foundation and I also think that he was at the Chicago symposium. Not much of a description, but if it helps, he wears glasses.

      Maybe your doctor and Dr. Barohn would agree to confer.

    • April 7, 2010 at 10:44 pm

      I think he is a dead ringer for dr. ray, 90210.

    • April 7, 2010 at 11:54 pm

      Hi Stacey,
      I am concerned because your sister said the Doctor told her it was unecessary to test her children.
      I would run the genetics by your Doctor, because a Mother can affect her children or the children can be carriers. I think the percentage is 50%.
      Wouldn’t your sister want to know for her children’s sake? What about the future later and family plannning?
      I wouldn’t trust hearsay or unscientific advice from anyone. I hope you find the best Doctor and the best medical facts out there. I think you have a little voice inside you Stacey. Trust that voice.
      I know you work overtime taking care of your husband and taking care of Connor and I hope you get the medical tests and the care You need.
      Maybe can forgive the cruel and unjustified remarks your frustrated and unhappy sister has made.
      My prayers for you and yours.

    • Anonymous
      April 8, 2010 at 8:29 am

      I think it’s best I have my own Dr and if he or she wants to confer with her Dr, maybe.

      And, Katy…thank you and you’re right ! 🙂

      I should know when my appt is by Friday afternoon. That’s when the lady from MDA is back.