CIDP & No conduction block
Thanks everyone for your replies. Pam, here is some more information. It is actually my 9 year old daughter I am writing about. Back in April 2005 she underwent her first NCV which showed low readings. She then had the blood test through Athena Diagnostics to test for cetain types of CMT. All of the tests came back negative. She then had nerve & muscle biopsies and a spinal tap. The spinal tap results came back first and showed an elevated protein level. Our neurologist at the time thought because of that it might be CIDP so he put her on a 5 day IVIG treatment. This did not improve her symptoms at all. Taking that into consideration along with the results of the biopsies he felt certain that she had some form of CMT1 even though the blood tests came back negative. I opted to get a second opinion and we decided to take her down to a neurologist at Washington University in St. Louis who had more experience in dealing with CIDP. On the day of our appointment she came in and had thoroughly reviewed all of Carley’s prior medical tests and records. Although she was not certain, she felt that it was CIDP and not CMT that Carley was dealing with. She then put her through a more thorough NCV test. She said that this confirmed her belief because her readings in her different extremeites were all over the board. She said that CMT readings are consisitent regardless of where they are taken. Another reason she was leaning towards a CIDP dx was that Carley had both distal and proximinal weakness in her arms and legs. The elevated protein level, negative blood tests and no family history of CMT also led to this dx. She could not be certain though because no conduction block showed up on the NCV. One article I read on the internet basically said that if there is no conduction block then it probably isn’t CIDP. That is what led to my question in the forum.
Carley has been taking 125 mg of prednisone every Friday and Saturday night for about 5 months now. She has seemed to be making some improvements in her strenght during that time. Our neurologist in St. Louis said that Carley could have developed CIDP as young as 12 months of age. She said that because of this it would take an extended period of time for her to reverse the damage that has been done.
That leads me to another question. Can someone with CIDP have slow progression that extends gradually like this over years and years? From reading about CIDP it sounds like it progresses more quickly and the person goes from fully functional to very disabled in a short period of time if they are not treated.
We will be taking Carley back to St. Louis in July for another appointment. It is just such a hopeless feeling not knowing exactly what is wrong with my little girl.