Reply To: MMN anyone update on here with it?

April 9, 2020 at 4:12 pm

Hi Peter and Welcome. You may have read my posts about my friend Jeff. Your note reminded me of him in the early stages of CIDP. If you haven’t read them you can see them here. I don’t want to repeat so much information but feel free to ask about anything. I think it is normal and a good thing you may have MMN or maybe even CIDP. Both are more manageable than ALS although strides have been made there too. Jeff was initially diagnosed with a ‘let’s call it CIDP but realize it could be MMN or ALS’. He had the spinal tap etc and it supported the diagnosis. It was the most dreaded thing I could imagine hearing. Everyone’s worst nightmare right? That was a year and a half ago and Jeff has been on quite a ride but today the news is comparatively good. He began having issues in 2019 starting with hip pain. The X-rays showed a congenital defect and the hip was replaced. He recovered normally. Next he developed weakness in his legs but nobody knew what it was. Finally when he could no longer walk without falling he went to the ER at his primary care’s suggestion. He was seen by a neurosurgeon who discovered via MRI severe stenosis. The surgeon,a Johns Hopkins grad and locally respected said it was horribly inflamed and a mess but he got the nerves untangled and free. Expecting a long recovery Jeff began that process. But he never recovered. At a follow up with the surgeon several weeks afterward the surgeon was visibly alarmed at a lack of recovery and called a colleague who was the Head of Neurology at the University of Florida Shands Research Hospital in Gainesville FL. They agreed to see Jeff the next day. Dr. Paul Wymer who had been an ALS physician in Syracuse was now at Shands Neurology diagnosing and developing treatment plans for patients with rare neurological symptoms and diseases. He did the exams and tests that day. He ordered a spinal tap and within a day of the results started Jeff on IVig infusions 4x a month. Kind of where you are now. Keeping in mind every patient is different, every treatment is different, every response to treatment is different Jeff entered the twilight zone. We all did. The infusions did nothing to stop the ravages of the disease whatever disease it was. We didn’t know and the doctor didn’t know. But we knew this doctor had an understanding of things nobody else did so we put Jeff in his hands and trusted and believed if there was a way through this for us he would be it. I am not a blind faith person but in this situation we just rolled – no second guessing- no freaking out – just hard hard work. Almost 4 months in Jeff stopped getting worse. By then he was down to 140 lbs., all his muscles atrophied, skin hanging off bones. He could no longer use his legs at all and then he lost use of his arms and his hands were almost gone. He had to be lifted from bed to wheelchair and everything had to be done for him. He could still feed himself with his hands. He was one day away from going into nursing care when I noticed a very slight change which was as bad as he was he had stopped getting worse.i told the doctor so he immediately started massive prednisone which kicked up the tiny effect of the infusions. Very slowly the deterioration process stopped and ever so slightly improvement began. It was not long after that the doctor said he could take ALS off the table. That was a happy day. He left MMN out there for a while longer and in another month by June he called it CIDP. It had been 6 long months of struggle with finding care, paying bills, dealing with insurance and a medical support community with no knowledge of the disease or ability to provide support.By last July he was well enough to drive his car. He drove it 1400 miles to a cabin up north where we installed a lift to get him in and out and he continued to work at walking without the walker. From the minute he could move a limb slightly he worked it with weights for hours every day. The muscles started to come back. We cooked and fed him and fed him. By fall he was starting to walk without the walker holding on to walls and furniture. It’s been slow but steady ever since. He has rebuilt his construction business. He has ridden his Harley a few times recently. His legs are not as strong anymore, his balance needs work and his feet feel fuzzy. He is down to one infusion per month and minimal prednisone. They are weaning him off slowly which is scary fearing it will leap back to life but we are cautiously optimistic. We are feeling quite a bit like normal humans again. I would have never made it through this without this forum and the organization behind it. I can’t tell you how this will go for you but I can tell you what your story is so far has some plus points. Your doctor sounds well versed which is huge. Many many people on here have not been diagnosed or are and can’t find treatment or they get help and it’s taken away. My advice is read everything you can find on here. Talk to other people who are a few steps ahead or behind you in the journey. It really helps to have information and to keep mentally strong with others who share the burden of it. They help you and you help them. If you have MMN you will find others here to add to your skill set. There is a man I met through here who has GB but he is the one who was there in my darkest days helping me find people with CIDP willing to shine a light on the scariest parts like nursing home care and patient depression. I am a caretaker so there were others who supported me and each other in their patient support mode. Jeff is the most stubborn person I’ve ever met. I felt is was his worst flaw. As it turned out it was his greatest tool. He never gave up, he never gave in. He forced himself to exceed impossible expectations he set for himself. He would not have made it back without that determination. He lost everything but his house and he almost lost that. We know CIDP is chronic and can come knock’n any time. We don’t worry about it but it is definitely a consideration in every part of life. I feel if/when it comes this time we will have resources like private pay health care and food delivery and transportation and trash pick up and all the things we didn’t know before. Knowledge is power and there is a lot of it here. And generous people who share their knowledge with understanding, caring and compassion. I’m so glad you found this place because I hadn’t updated Jeff’s progress for a while and now I have. I’ll look forward to seeing you along the way and feel optimistic now that I’ve seen what I’ve seen that there is a lot of promise out there with these rare new diseases. All my best.