CIDP & No Conduction Block
AnonymousMay 16, 2006 at 10:19 pm
You are asking if it is possible to have CIDP even though there is no damage according to a NCS or EMG? Did you have a spinal tap/lumbar pucture with elevated protein levels in your spinal fluid (over 45?) Did you have a sural nerve biospy done to Dx CIDP?
If not, then just what are your symptoms. CIDP usually presents assymmetrically in an ascending order, beginning with the peripheral nerves, such as the feet & hands, then moving its way up. If you have muscle weakness, wouldn’t it show up on a nerve conduction study, as the nerves would have to affect the impulse to the muscle.
I guess we need more information about your symptoms before we could really help you out. Please post more…
AnonymousMay 17, 2006 at 11:59 am
I don’t beleive that a conduction block is necessary to dx CDIP…..I do beleive that an NCV or Needle EMG will show some slowing of the conduction of impulses through the nerves which is enough, based on the Neurological interpretation of the study, to diagnosis CDIP.
Remember I am not a Doctor…..I only play one on…………..
best of luck
AnonymousMay 17, 2006 at 2:21 pm
I was diagnosed with CIDP several years ago, and much of that diagnosis was based upon reduced nerve velocity as seen in emgs and absent tendon reflexes, as well as high protein levels in the spinal fluid. My last emg showed a marked improvement and my reflexes are fairly strong. However, I haven’t had a marked improvement in symptoms; instead, the whole course of the disorder seems to have changed from relapsing to progressive. My neuro has been retesting me for things that were already ruled out, but so far nothing else has presented itself, and she’s still content to say I have CIDP, despite the clinical test results.
I see her again in July; it’ll be interesting to see what she says then.
Best wishes in the battle,
AnonymousMay 18, 2006 at 9:20 pm
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.
AnonymousMay 18, 2006 at 9:56 pm
some past history of your daughter prior to 2005 would be helpful. why was gbs, as opposed to cidp, Dxed? why was pp not tried before prednisone? prednisone has such bad side effects especially at the dose she is taking. iniv & pp should always be tried before steroids. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 18, 2006 at 10:28 pm
First off, I am not a doctor, but it does sound like CIDP to me, not CMT. I was under the understanding that CMT was fairly easy to Dx based on blood tests & the fact that it is genetic. I know you may not believe this right now, but be grateful that it most likely is CIDP & Not CMT. Secondly, CIDP, unlike GBS often does present itself slowly, & can take years to develop. I happen to have had a rather sudden onset, 6 weeks from first symptoms to being a quad in 6 weeks, but that is not the norm. Mostly it takes months to develop, sometimes years.
It sounds like your neuro is doing everything right, you were smart to get a second opinion. It is not unusual for everyone who gets IVIG to have miraculous results, actually only 60% of people with CIDP respond well to IVIG. Plasma pheresis also seems to work better for those with GBS & not so well with CIDP. My neuro told me last fall that steroids are the drug of choice now for CIDP; they do have some terrible side effects, but only if one is on them for long term use at high dosages. Your daughter is getting a rather high dose, have they considered infusing solumedrol instead of oral prednisone? It is much easier on the stomach…
One more thing, I have read posts of babies & very young children having CIDP. They seem to have a very good recovery rate, & also a good chance of going into remission. Not to get your hopes up, but I know of many cases of younger people who have had this happen. Rest assured that you are doing all you can for your daughter, & I think she will end up doing very well. CIDP is not the end of the world, there are so many things so much worse out there.
AnonymousMay 19, 2006 at 3:12 pm
Gene and Pam,
Thank you for your thoughts and comments.
Believe me, I would definately welcome a diagnoses of CIDP. While it is no walk in the park, unlike CMT it can be treated and has a chance to go into remission. Our neuro in St. Louis said that she wasn’t suprised that the IVIG had no effect on Carley. If she has had it for all of these years she said that just a 5 day treatment would not have helped her. I did not question her prescribing the prednisone treatment over PP. I figured that she knew much more about treatments than I. Fortunately Carley has not experienced any side effects to the prednisone so far. The only thing that we have noticed is that her face gets somewhat flushed the day after she takes it. The only thing that concerns me about it possibly being CMT is that our old neuro said that even though there is no family history it could be a spontaneous mutation of one of the genes. And apparently there are certain genes that are not yet tested for through the blood tests. I also did read that children with CIDP seem to have better recovery rates than adults. I guess we will just keep our fingers crossed and do whatever we can for Carley.
You must be logged in to reply to this topic.