cidp and Charcot marie tooth type 1a
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July 6, 2010 at 12:58 pm
After being weak my whole life I now have answers! I was dx with CIDP 10 yrs ago!! I have gone from unable to feed myself to walking and working part time. It has been a long road lots of ups and downs! I had IVIG up until 3 months ago unfrtunatly I can no longer go that route. ( menigitis one too many times) I saw a specialist in Vncouver who basically told me oh well nothing left to do for you. I told him about all the options there are.. he said well I will refer you to someone else.. but it will be 7 to 9 mos. I had traveled 12 hrs to see him and was not leaving his office til I saw someone… long storey short saaw a wonderful Dr. the next day.. .I have cidp ( d-uh) but she also did some genetic testing and I also have Charcot Marie Tooth type 1A . It explained alot that the cidp did not. I have been weak since birth and my feet are changing shape and trouble with my hands that the Both Drs are quite excited about ths as it is extremely rare to have this combination. My GP said I have made his career very interesting and owes me a debt of gratitude ( lol ) I tld him to just send cash!!!
Keep up the fight
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July 6, 2010 at 3:59 pm
Sorry to hear you have both. Are they for sure it’s both ?
I was misdiagnosed for almost four years with CIDP. I have cmt 1a.
good luck to you and I”m glad you have answers !
Stacey
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July 6, 2010 at 6:33 pm
Another member Liz (codystanley) has CIDP & CMT. You should do a search for her. I’m sure she would be willing to talk with you. She’s always been very supportive.
I’m glad you finally have a diagnosis. Have the dr’s discussed any other treatments for your CIDP?
Kelly
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July 7, 2010 at 12:25 pm
Sonia,
I am sorry to har about new diagnosis but now you have some answers as to why you feel this way.
Who did you get to see in Vanocuver?
What are the next steps to help you feel better?
Take care
Rhonda
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July 7, 2010 at 2:14 pm
Hello Sonia,
I was given a VERY positive diagnosis of CIDP in 1998. Went through all the tests but a nerve biopsy. The neurologist practically shouted at me and INSISTED that I know and tell people I have CIDP. The last neurologist I saw (he was new) was in 2007 and he took one look at my feet and said “you have CMT”. He agreed that I do also have CIDP. I went through the required tests for CMT and the results were inconclusive, no diagnosis of what kind. The neurologist said that some very rare forms of CMT cannot be diagnosed, but he felt I had CMT as well as CIDP. I accept CIDP because I was given a positive diagnosis, but until I show conclusive signs of CMT, I take that as a maybe. Only time will tell. -
August 17, 2010 at 11:10 pm
Yes we are 99.9% sure I have both cidp and cmt 1A. Not really sure where we go from here. There is no real treatment for cmt. I go back to see Dr. Chapman in Vancouver in Oct. She wants me to come more often.. I had to explain just how ffar I have to travel.. it is also difficult because I am a single mum and have to work.
I am having my youngest daughter tested as well. I am still in alot of pain but am feeling much better now that I am no longer getting the ivig. For the last year it has just been poisining me. However the ivig did get me out of the wheel chair.. this would not have happened if I just had cmt.
Life is never dull….. -
August 17, 2010 at 11:10 pm
Yes we are 99.9% sure I have both cidp and cmt 1A. Not really sure where we go from here. There is no real treatment for cmt. I go back to see Dr. Chapman in Vancouver in Oct. She wants me to come more often.. I had to explain just how ffar I have to travel.. it is also difficult because I am a single mum and have to work.
I am having my youngest daughter tested as well. I am still in alot of pain but am feeling much better now that I am no longer getting the ivig. For the last year it has just been poisining me. However the ivig did get me out of the wheel chair.. this would not have happened if I just had cmt.
Life is never dull….. -
August 19, 2010 at 1:17 pm
Have you tried on of the Centers of Excellence? Took me a whole two weeks to get my appointment. And was greeted by three doctors there. They have been a God send. Good luck.
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