September 6, 2011 at 8:37 pm
has anyone else been told they have “atypical cidp”? That is what Dr Dyck wrote in my report I received back from Mayo. the treatment is the same–IVIG. Seems strang— since CIDP affects every single person differently–is there really a “typical cidp”
AnonymousSeptember 6, 2011 at 8:51 pm
i believe its gbs, aidp, then cidp based on how long it takes to progress. i have cidp mgus. dont understand mgus yet.
talk about atypical, ivig catalysted my cidp, plasma ex does nothing nor solu medrol. prednisone 60mg seems to at least slow it. all tests r fine but high protien. supposed to try chemo tomorrow.. =/
September 7, 2011 at 8:44 am
What are your symptoms with your “atypical” CIDP?
AnonymousSeptember 7, 2011 at 12:44 pm
In another thread a long, long time ago, I posted a reference to a web site that described several types of CIDP.
At any rate, it seems to me, “typical CIDP” meets the “standard criteria.” What are they? Several, and too numerous for this reply.
Summarizing, and in my opinion (So we could say according to yuehan) atypical CIDP is not symmetrical, does not have high spinal fluid readings, probably does not equally involve sensory and motor nerves and may not affect the deep tendon reflexes. Additionally, the emg/ncv readings are also not normal. Think “atypical.”
Some authors have stated typical CIDP begins at the feet and moves up. One form of CIDP starts at the face.
I just read an article stating that more than 50% of CIDP cases are Atypical.
AnonymousSeptember 7, 2011 at 7:38 pm
yes, thank you. ok, right….
Remove all the commas following “..is not symmetrical…” and replace the commas with or, or, or, and finally, or may not.
further, re-read “..is not symmetrical” as “…either is not symmetrical and then substitute or, or , or.
Or, re-read it as ” or and or” or “maybe all of the above” or “none of the above” or one or more of these characteristics.
Neither an English Major nor Poet am I
September 7, 2011 at 10:31 pm
symptoms are weakness and sensory loss in feet, ankles and calves–unable to stand on toes or heels. spinal fluid was 55 and clear,emg/ncv abnormal, showed active cidp, nerve biopsy showed some axonal involvemnet and a pattern of 1%demylination–3% remylination (i didnt quite understand this, is was on my report i received in mail, so havent had a chance to ? dr on it) no autonomic involvement, its distal,slowly progressive weakness—seems to be in the active but stabile stage. Right foot affected a little more than left.
AnonymousSeptember 7, 2011 at 10:38 pm
Emily was dx’d with atypical CIDP due to right eye involvement. Her right eye became “stuck” looking in towards her nose. This apparently had the “experts” at the MDA perplexed.
She had all the other classic CIDP symptoms. Pain, fatigue, muscle pain, loss of reflexes, etc.
Her MRI showed inflammation of cranial nerves & of her spine from the lower lumbar down. She also had an initial protein level of 90 something (I can’t remember exactly what it was at this moment). Her EMG (taken 11 months after diagnosis of GBS) showed slowed conduction with a small amount of demyelination.
She also had some autonomic involvement. She had trouble swallowing but didn’t realize it until later on when she didn’t have the trouble any more. She also had some intestinal issues & bladder issues (she had “accidents”).
AnonymousSeptember 10, 2011 at 9:47 am
CIDP is “Chronic Inflammatory Demyelinating Polyneuropathy”
Chronic because it happens over a longer time period as described above
Inflammatory because the Axon get inflamed in the process of destruction
Demyelinating because the immune system attacks the myelin sheath around the axon
and Polyneuropathy because it happens in many places at one time
It is in the class of Peripheral Neuropathies because it usually happens in the hands and feet, not the autonomic Nervous system.
Atypical because part of one of these criteria may be different. or possibly atypical because the presentation is not quite normal, or the progression of the disease differs from the norms.
Don’t bum out. Focus on getting better. Read and research your case. Learn more about your body. All that you can learn will help you and your Dr. (who is excellent by the way) treat you effectively.
You have one of the best in the country helping you out. I hope for the best for you !!
AnonymousSeptember 10, 2011 at 9:19 pm
I saw one of my neuorologists yesterday Friday, Sept. 9 following yet another set of emg/ncv nerve & muscle tests. In fact, he took over the testing from the other two doctors.
Me: What did the tests show?
Neuro: You’ve got atypical CIDP.
Me: What does that mean?
Neuro: It means you do not have the normal pattern of swollen, inflammed nerves with both muscle and sensory involvement causing problems. Yours is not symmetrical. Yours could be called multifocal CIDP.
Me: What does multifocal mean?
Neuro: In your case, it means that different muscle groups are involved here and there. The involvement is not equal on both sides and it is not equal in the same muscle groups.
I thought this 1999 GBS-CIDP newsletter report was appropriate for this thread.
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