IVG

[Guest guest]

Carl,

Thank you for your response. I am not sure which type of CMT my husband has. All

I know is that we are both very nervous about this IVIG treatment. I have a ton

of questions to ask, but he starts the treatment this coming Monday and I can't

be there. His mother will be there with him as he has to go to his doctor's

office to start the treatments. They have told us that after the first

treatment, they will have the visiting nurses come to the house once a week for

a month and then twice a month for we don't know how long. Again, thank

you for your response.

Becky **** Becky, if you are both nervous and have tons of questions to ask

the doctor about your husbands IVG treatment, I'd make SURE I got those answered

BEFORE ANY " treatment " started. You can always cancel the appointment and

schedule a time when you and your husband can both be there with the doc to ask

questions. And on this, I would also get a 2nd opinion. It is a good thing to be

pro-active and KNOW just what this is. Those of us who have been here for awhile

know that just because a medical professional suggests something to help us,

that just might not be coming from a truly well-informed and educated doc

specializing in CMT. (and I mean no disrespect for the doctors amongst us, but

those of us living with CMT are the true " experts " ) Becky, if you are both

nervous and have tons of questions, those are 2 signs that I would use to halt

Monday's appointment until you feel 100% SURE this is RIGHT. ~ Gretchen

[Guest guest]

I had IVG infusion because my medical team thought I might have CIDP.

I only wish I had got to sooner to learn about this. Nothing

happened after my infusions. Nothing. I certainly was not " better "

and I consider the experience a total waste of my time and health.

Later, after asking the " right " questions which I have learned from

some of you here, I asked for a report of my NCV/EMG and it shows

evidence of CMT Type 2. So that's where I am.

Todd