← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

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I don't know if this is relevant to this Support Group, but I have been diagnosed with MMN. I will be starting a 6 month course of IVIg. My research has said that, if the IVIg doesn't work, I may have ALS. I have foot drop and lots of neuropathy pain in this foot. I have been through many MRIs, EMG, NCS, and lab tests. Abnormal results are EMG, NCS, and anti-gangloside antibodies. Right now, Mayo Clinic has me in a "wait and see" mode and will be interested in seeing if the IVIg relieves my symptoms.

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Replies to "I don't know if this is relevant to this Support Group, but I have been diagnosed..."

@evigg208 I’m so very sorry to hear of you having these abnormal findings, with the tests! It was frustrating, i know, for me, when I got abnormal test results. These neurological, and many immunological disorders, can be very difficult, and time consuming for Medical Providers to diagnose! I’ve been through that process, several times. myself, and it was hard to cope, when I was in a so-called ‘in between diagnostic place’! I feel your frustration, and this must really be hard for you! Sometimes, it takes the Doctor’s a couple years to come up with a firm diagnosis! I am nearly 80 now, waiting on a firmer diagnosis of the exact type or strain of Chronic inflammatory Polyneuropathy! Maybe, I’ll find out from my immunologist soon. The one consolation ( if you want to put it that way ), is that my blood test antibodies, and analysis of polyneuropathy tests and symptoms, has been analyzed by the Mayo Clinic Medical Team, and abnormal results were found, so my immunologist has set up IVIg infusion of the Pfizer version of ‘hizentra’! Originally, he ordered ‘hizentra’ but changed it last week! I just can’t remember the exact name. So, I start the initial infusion this week. Back when I was 37 years old, I had some areas of numbness, pins and needles sensations, in a number of places, including my back, and limbs! The caring neurologist had me admitted to hospital, for a week of tests. I had EMG testing, spinal puncture, to check for protein in the spinal fluid, and Cat scans, along with exams from medical students and Attending Physician’s! The best they could come up with, was possible demyelinating disease! I had that diagnosis for a couple years! It took another hospital stay, when my symptoms became more defined, for the Medical Team Investigators to finally come up with the right diagnosis! An angiogram revealed an inoperable anomaly of an artery, in the cerebellsr/pons brainstem area, that was causing my irritating symptoms! So, on and off, I’ve been dealing with this investigative phase of waiting on a neurological diagnosis, several times! Oh, and I haven’t even told you about how long I had to wait for a diagnosis, of Parkinson’s Disease, where my symptoms included freezing episodes, where I would stiffen up, and fall over, unable to stop myself from falling flat on my face! That story is for another time, though! I wish you the best of luck, and I hope the final diagnosis, for you, is something that you can accept and be able to deal with! Here at Connect, with this forum, we do care about each other, and can relate to what you are going through!