I was diagnosed with CDIP last year. My neurologist left the practice and moved so I ended up seeing a differnt Nuero a couple of months ago. After seeing him, he said I do not have CDIP but have Charcot Marie Tooth. Has anyone been tested for CMT but it turned out to actually be CDIP or vice versa?
Hi Brian, check out JC's link below for our CMT support site.
Yes, this also happened to me. I was told I have CIPD four years ago. I joined the CIPD support group, but I began to wonder if the diagnosis was correct. My doctor did not think my problems were serious enough for treatment, and was amazed that I was doing so well. I noticed that one of the top doctors for CIDP is in Pittsburgh, so I went to him for a second opinion. He said right away that I do not have CIDP, but an inherited neuropathy. His diagnosos was made when he discovered that I have a reflex in my legs that is not there with CIDP. My main problem is weakness in my lower legs and ankles, and cold feet with some numbness. My hands are also weaker.
Good luch to you, Brian.
Phoebe
I guess I'm like so many people we want to know what is wrong with our bodies....we look at several diesase or we were told it was this or that dieases. Then what they do for us, or NOT do for us....we might look further for more answers....that is me.
If I ask a question of one of my doctors I don't think I am that question...just looking for answers....
If I have this CIDP....I want to know....If I had CMT I would like to know it....what is wrong with finding out...why isn't it ok for me to ask a question while no one having one for me right now?
Well that is where I been. So for me it's a search for the truth...of what is wrong with my body? I might never know for years, or never? Or get lucky and I fnid the right set of doctors that will know...and I will get some type of help from them. I guess for me that is what it is all about....knowing what is wrong, getting the right care.
So I don't limit my self to one diease I look further then the end of my nose so to say....(mediford)
so I ask my first Neruo doctor, " could it be CMT"? he said no and explain why it wasn't....ok but I had to ask...
When I was told by my fist Neuro Doctor that he couldn't help me no longer...he try what he thought what would help me and had no luck. Told both me and my husband that I had to look for another Neuro doctor. So when I did and put in for apt....I was totally shock......why? They ask me flat blank right up front, "why or who thought I had CMT?" WHAT? I didn't know I was going to them for CMT. Never.
I raised my hand like in school again, because in truth I ask my first Neuro that question....but he told me NO...
So why did these doctors think they were seeing me for CMT? today I still don't understand....but they did one test on my one leg not on both or anywhere else.....just one leg and it was a EMG....the doctor told us he didn't trust any other doctors EMG's....he wanted to do it him self...he only did the pin part himself...by the way.
He wrote I was normal...while doing the EMG he did see I didn't move or feel when the pins were put in...and I was shock...I didn't feel a thing....He was confuse...he couldn't not explain why I can't feel or as they say, "kick on my muscels" true story. And they didn't understand why I have drop foot?
This a well known hospital for these dieases on my side of the World...couldn't explain what is going on with my body...but said for sure I didn't have CMT.
ruthie
Hi there,
It was the opposite for me. Two neurologists thought I had cmt, but the genetic testing came back negative. I went to another neuro to get it all sorted out and he diagnosed me with cidp, this time after a much more thorough nerve conduction, emg, and blood draw.
How are you doing with your new diagnosis?