diagnosis CIDP
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April 30, 2008 at 10:04 pm
Just checking on opinions. I was diagnosed with CIDP almost five years ago. I received six week pulses of IVIG which seemed to help a lot. With an insurance change came a new neurologist who informed me at the first visit I didn’t have CIDP and she would like to give me water and not tell me to see what happened.. She said I had some autoimmune thing but that wasn’t it. She also said the neuropathy was worse than five years prior and I had lost ankle reflexes that were there initially. She took blood and all came back normal including IGA< IGG etc. However, I did have low B12. I am now on injections for that. My B12 at diagnosis was fine at 668. At diagnosis I had oligoclonal bands in the spinal fluid and abnormal visual and somatosensory evoked potentials. MRI was normal. The problem is that I feel better with B12 and fatigue is improved. but the neuropathy is worse since stopping IVIG. I now have burning pain where as before it was only tingling, numbness, and a dull electrical current feel down my legs with tingling only in the hands. I have not had the horrible board like arm and leg fatigue I had when diagnosed since stopping IVIG. My biggest worry is that the neuropathy will get worse. She insists there is no muscle neuropathy as the nerve conduction and EMG showed "length dependent axonal polyneuropathy. Abnormal spontaneous repetitive discharges from right EDB. Left side was not tested. The study DOES NOT meet any diagnostic criteria for CIDP."
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April 30, 2008 at 10:35 pm
Some people never have an elevated protein in their l/p or abnormal ncv/emg (some) Clinical presentation counts as well as diagnostic. You have the burning/tingling, newly absent reflexes and you DID see a difference with ivig. That alone stands for something. Is it an hmo plan now? I assume you have been tested for the usual, lupus, ms etc. (you indicated mri was ok) so there really are no other logical deductions. If some sort of concrete proof is necessary for the insurance and doc., I guess a nerve biopsy would be conclusive, although it is not really used anymore and many who have had it wish they did not. If it were my only option to guarantee ivig, I personally might consider it. Vitamin b-12 as well as D, both would give energy to anyone, especially someone deficient, so the new energy from b-12 does not cancel out the need for ivig from a pureley neurological standpoint, just muscular. Just my opinion, but I am probably biased because as far as I am concearned ivig saved my 11 y/o and is now starting to bring back the boy I knew. I guess if there is some doubt in the dx, I would want to know. Is it possible to get another opinion with in the new insurance plan? Good luck and welcome, others will come along to help! The most important thing about this disease is to remember that there is no typical presentation, everyone is different and what works for one may not for another, but something will eventually work!
Dawn Kevies mom -
April 30, 2008 at 10:37 pm
Go with your Gut feeling.
If you feel something is not right do something about it.
Sounds like you are not happy with new Doc. Try to change to another one if at all possible or keep voicing your feelings to this Doc.
See if you can get more testing done.
Rhonda from Canada
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April 30, 2008 at 10:42 pm
By the way, the burning and tingling is peripheral neuropathy, which constitutes cidp. I am not sure what muscular neurapathy is as you said your neuro mentioned. With cidp it is neuromuscular because the muscles don’t get the message that the nerves are sending, because the inflamation does not allow the nerves to receive the message from the brain. Maybe you can explain what the doc meant, it is late and I do not want to be misunderstanding what you wrote and replying in error, so please correct me if I misunderstood the comment. (too much homework with the kids fries my brain!!!)
Dawn
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