My sisters CMT Dr is Richard Barohn

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

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.

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

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.

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

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.