MMN anyone update on here with it?

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This topic contains 16 replies, has 7 voices, and was last updated by  Janet Aubry 3 months, 1 week ago.

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  • #116395

    ChicagoCIDP
    Participant

    Great post Janet! I wish more people would give their experiences here. Helps us maybe gauge what’s happening or what to expect. I was diagnosed in April 2019. Initial symptoms June 2018 was tingling in my feet while I went for a run 8 weeks post shoulder surgery (believed to be the trigger in my case). Feet got worse in the Fall and started feeling buzzing on fingertips. Winter, I was twisting my ankles seemingly all the time and didn’t know why. Had basic neurological tests but negative. Early March 2019 my upper leg power seemed to vanish overnight! Got every test possible as soon as possible. Positive EMG, Positive elevated protein in spinal fluid and presented accordingly. CIDP.

    8 weeks ago started 80 mg Prednisone, did wonders. After 2 weeks dropped to 70, still good. At 4 weeks went to 60, some sensations can back, also started 500 mg x2 daily Cellcept. Met with the doc and bumped back up to 80 mg Prednisone. After a week I requested to go to 100 mg to “get over the hump” and working even better but I’m not whole yet and unclear what the long term future will be. Also jumped to 1000 mg x2 daily Cellcept.

    Planning on staying at a high dose of Prednisone until the Cellcept kicks in about mid-July and then start to taper Prednisone and hope for the best. I’d love to hear from anyone who been down a similar road like this and how it worked out.

    So it seems the trick to stopping CIDP is resetting your immune system. Has any read or tried anything involving a 5 day fast that could reset everything? I’m tempted to give this a shot in the near future.

    #116396

    Janet Aubry
    Participant

    My approach as the caregiver for my friend Jeff is to look at everything out there that sounds like it might even remotely help and then run it by the doctor before trying it. Jeff and the doctor are usually onboard with dietary things and the doctor is very inclusive of our thoughts in the whole treatment. I know Jeff has some supplemental non prescription meds he wants to try for tinnitus and what looks like a terrible discoloration and disintegration of his toenails and fingernails which looks to be a fungus. We don’t know if that is inflammation worsened by or related to CIDP or not because he had it long before he was diagnosed but it is getting worse. For people who are getting a “bad diagnosis” I can only say CIDP is so rare most doctors have never heard of it. It would be best if possible to do a search for a doctor with experience in treating it and probably a highly rated neurology center or a local or nearby teaching and research university neurological center would be a place to start. I google everything and could have found our doctor that way however we in fact found him because Jeff had two surgeries – one for hip pain and one for leg weakness. A top orthopedic sports medicine surgeon replaced that hip which he diagnosed was congenitally destined for eventual failure. The surgery was successful. Less than a year later Jeff saw a neurosurgeon after some back and leg pain and a lot of weakness resulted in falling and extreme difficulty walking. He also experienced some unusual feeling in his feet. An MRI showed the nerves in his spine were being encroached upon by stenosis and he was referred to a neurosurgeon who did surgery to free up the nerves. The surgeon told me after surgery that the nerves were greatly more impinged than the MRI’s showed and it took a long time to free them and get them ready to begin to regenerate and heal. As it turned out, he never healed and after several weeks the neurosurgeon was so alarmed by the weakness in his legs that he made a personal call to the head of the Neurology Dept. at UF and Jeff was seen immediately. Someone must have had some inkling what was wrong because they arranged for him to see the Dr. he has now. Dr.Wymer’s background was in Syracuse NY in the front lines for clinical treatment of ALS patients. He did a lot of research and was eventually invited to the University of Florida Shands Medical Center which is in the process of building a heavily funded medical research and treatment program to address all medicine at a very high level. Dr. Wymer’s job at Shands Neurology is to evaluate patients who present with unusual and or rare neurological symptoms and determine a diagnosis and treatment plan for them. He had by then moved from strictly ALS patients to some CIDP patients. It was through that serendipity of events that Jeff ended up seeing and being almost immediately diagnosed with CIDP by Dr. Wymer. I will say the diagnosis was not 100 percent nailed down until recently. The spinal fluid showed all the correct markers for it but some of them were also similar to MMN and ALS. Jeff’s lack of response to IVIg kept the CIDP diagnosis but with the others still not eliminated. The eventual positive response to IVIg treatments over 4 months boosted by the addition of prednisone was the thing that led Dr. Wymer to feel very confident with the CIDP diagnosis. Therefore, if a Dr. like that in a place like UF Shands takes a while to arrive at a more certain diagnosis then I don’t find it unusual that other doctor’s are still trying to find enough evidence in the science and the response to treatment to narrow down exactly what of several potential neurological possibilities might be in play at any given time. As Dr. Wymer says there is the science of it (finding out which disease it is) and the art of it (the treatment options and how and when they are applied to achieve patient improvement). We all know by now there is no cure, just treatment. And we know it is chronic, which means it will come back. That is the challenge for the patient and the doctor together.I think the doctor you see is critically important and correlates highly to your chances of getting more successful treatment results. Nothing is for sure with CIDP and everyone is different so you really need people on your team who can read the tea leaves and trust each other to go in a good directions and know when to shift gears if it isn’t working. These forums are so valuable to me in doing my part on Jeff’s team. If anyone does anything that seems to work we all want to know about it. I look forward to the results of Chicago’s efforts to restart his immune system by whatever means his doctor gives him the green light to do and wish you well!

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