MMN anyone update on here with it?

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    • #112436
      Roz1
      Participant

      My husband is diagnosed with MMN and
      Getting IVIG for 4 months, should he be feeling stronger?

    • #112442
      Jim-LA
      Moderator
    • #112443
      Roz1
      Participant

      Thank you saw that but Nothing recent…. so hard to see if this is really what he has and after 4 Neurologist….. 4 IVIG treatment which he needs forever per Dr.
      he has started PT and hand PT…. now the back of his left ankle is hurting. Maybe from new PT.
      Does this IVIG make you always feel better? Dr thinks he is stronger but he says he can’t tell…..
      thank you for any help on this confusing disease…. we are still wondering I’d feel Dr. is right…?

    • #112444
      jk
      Participant

      Response to IVIG in patients varies. Patients who respond to IVIG generally do so within 2-6 weeks. However, this improvement will not last and IVIG must be repeated every 2-4 weeks. Perhaps your husband would benefit from more IVIG more often. Ask your doctor about this.

      Some patients may eventually stop responding to IVIG. And, sadly, some patients may not respond at all to IVIG.

      I have quoted this from PubMed for you: “The correct diagnosis, however, can be difficult to make in patients with atypical or overlapping presentations, or nondefinitive laboratory studies. First-line treatments include intravenous immunoglobulin (IVIg), corticosteroids or plasmapheresis for CIDP; IVIg for MMN; rituximab for anti-MAG neuropathy; and irradiation or chemotherapy for POEMS syndrome. A correct diagnosis is required for choosing the appropriate treatment, with the aim of preventing progressive neuropathy.”

      In my own case, several major medical centers never did agree on my diagnosis. You mention you’ve already seen 4 neurologists. At least consider finding a center of excellence from this website and seek another opinion.

      Click here: https://www.gbs-cidp.org/support/centers-of-excellence-2/

      It becomes a long, difficult and discouraging battle. Don’t give up.

    • #112445
      Roz1
      Participant

      Thank you both… yes we are at USF which is a center. New Dr. is great Hera Stevens.
      Just seems sad so many people suffer from so many crazy things.
      We have a follow up in April his IVIG dose is 180 over 3 days now (60) per day and that is up from first 2 months of 150 over 3 day (50) per day …. I see when the infusion rate is faster it’s giving him headache and sore arm… I have asked the nurse to slow it down… it’s at least 5-6 hrs now. He is a difficult stick only good in hands so he may have to get a port. Thank you for listening and your help, I so wish it were me not him… he doesn’t really complain which is why nurse ups his IVIG rate so I think I have convinced him slow is better!

    • #112446
      jk
      Participant

      Some people find relief from the side effects of IVIG:

      1. As you stated, slow it down. Must infusion centers probably have automatic, digital, battery powered pumps by now. It’s hard to verify the rate the nurse puts in. If necessary, have your doctor write an order for the desired rates. Some patients simply cannot handle the IVIG manufacturers’ stated rates.
      2. Drink a lot of water the day prior to and the day of infusion.
      3. Take an NSAID- ask your doctor
      4. Pre-treat with benadryl. Some people take their own, some people get an RX for the infusion center from their doctor.

      Ask you doctor about 3 and 4.

      I see in your reply that the doctor is already giving him more IVIG. And, I understand you wish it were you. I bet if it were you he would wish it was him.

    • #112447
      jk
      Participant

      I went to USF, once, in an attempt to see Dr Gooch. Sadly, I was seen by someone else. A Doctor who stated, after a short in-office clinical review and reviewing my files only, “No, you do not have CIDP.”

      Well, guess what, yes I do. Just not the textbook version. The moral of my story is to keep searching until you find both a doctor and a treatment that works or a clear and definitive diagnosis that no known treatment is likely to work.

    • #112450
      Roz1
      Participant

      Thank you was It Dr Stevens???

    • #116327
      Rosebud
      Participant

      (When your new diagnosis is so rare that the last update was two years ago)
      I want to get a second opinion, but I need to start treatment very soon. I’m losing the use of my right arm more and more. Didn’t I read somewhere than MMN patients don’t have pain? That’s horse hockey. It’s painful and demoralizing. #rare #rareuntilitsyou #MMN
      Lord, I call upon Thee, hear me. Hear the voice of my prayer.

    • #116356
      Janet Aubry
      Participant

      ROZ1 My boyfriend has MMN type of CIPD. Email me if you want to know what I’ve found. I’m on this site as a caretaker as Florida Jan.

    • #116390
      Debbie Zirpolo
      Participant

      I was officially diagnosed with MMN in 2014. That being said, I had unilateral symptoms since 2004 but was misdiagnosed and even underwent a left ulnar nerve surgery in 2005 that was totally unnecessary. I have been receiving IVIG since 2014 and have learned that slowing the rate of the infusion and spreading it out over 2 days helps tremendously with the side effects. IVIG has allowed me to keep working. However, my treatments have recently had my treatments cancelled as my infusion center CANNOT GET IVIG> and all IVIG patients are being cancelled!! Anyone else have this issue??? I always worried about the insurance and cost of treatments and never about having supply issues!! No one at our facility seems to know when they will be able to get more IVIG and reschedule treatments. Debbie

    • #116392
      Jim-LA
      Moderator

      The FDA publishes a status of shortages (Gammagard is at the top of the list right now) and you can find more info about the Ig shortage here:
      https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/cber-regulated-products-current-shortages

    • #116393
      Debbie Zirpolo
      Participant

      Thank you Jim. I had already researched and read all of those. I take Privigen which is not on the shortage list. In fact, according to the ASHP website Privigen is currently available.

      What stood out to me is that I am not seeing or hearing from others requiring IVIG treatments that are having the same issues. In my area they have stopped treating all outpatients requiring IVIG of any brand. They cannot tell us if or when our treatments will resume. Is anyone else having these issues?

      Debbie

    • #116394
      Janet Aubry
      Participant

      I posted a month or so ago about my friend’s MMN diagnosis. His CIDP had not responded at all in 4 months to IVIG and the diagnosis now 5 months ago had therefore not ruled out MMN or ALS. Finally the introduction of presdisone to his most recent IVIG treatment began to show a slight result. It is also interesting to note the IVIG brand he was taking became unavailable and Privigen was substituted in its place. Apparently those changes and maybe length of treatment time created the perfect conditions for improvement. Within 4 weeks from switching to Privigen and taking 60-80 mg of prednisone daily, he has gone from almost complete weakness/paralysis in both legs and both arms to mobility increasing daily. The doctor’s appointment at UF Shands Medical Center in Gainesville FL. resulted in a very happy doctor and patient as the doctor finally felt able to confirm CIDP without MMN or ALS any longer on the list of outside chances. While I never thought I would be happy to hear CIDP as the final diagnosis, things become relative after a while and so we are good with it probably because it narrows the field of focus and more clearly defines the options. Central to the acceptance of CIDP for us is seeing recent improvement after months of treatment with zero change in fact there had been only marked and ongoing deterioration.

      The prednisone creates sleeplessness which is a stress trigger and very high bursts of frequent eating binges. No weight gain has occurred but for him instead weight loss is an issue. He has lost 25 lbs. and all muscles have atrophied in less than 6 months.There is possibly an increased level of aggravation that has come with the prednisone but maybe it is just frustration. The weakness subsides very slighting but strength is coming slowly and steadily up to a point. He has parked the wheelchair, uses the walker, started driving this week, but is still feeling a lot of weakness with strength very slow to recover. He exercises every day and is working from home. He plans to live the best life he can and continue fighting for every inch of recovery he can get. We understand the disease is chronic and will return. We know it is unknown how long a remission we can expect to have or to what extent he can recover what he has lost in strength in his limbs before it returns. We know we will fight the IVIG shortage if it is real. One thing I know for sure is that the voices of the people in these forums have been a life line of information helping us find our way around each and every obstacle. I believe his neurologist at Shands is the right guy because he diagnosed quickly and began immediate treatment which he oversees carefully using his many years of experience particularly with ALS treatment. His comment at the last appointment upon seeing the response finally come was this “now that we know the science of it it’s time to do the art of it”. I likened it to a race car – I told Jeff he is the Ferrari and Dr. Wymer is the tuner. Jeff is driving the car, or trying to, but without a good tuner it isn’t going to run well enough to make the race the best it can be. Having a doctor that you can have a relationship like that with has kept us in the race for sure and we hope to stay in it for along time to come along with the ups and downs. Thank you to those who suffer yet take the time to help those who are undiagnosed, mis-diagnosed, waiting for a response to the IVIg and who are relapsing. We will stay in touch on this site over the long haul in order to do our part to give everyone else the help and support we have received and will continue to need for the rest of Jeff’s life.

    • #116395
      David
      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!

    • #117577
      Peter Powell
      Participant

      Hi, I’m new to this forum. Originally diagnosed with ALS about 2 months ago, however my doc re-did the NCD & with a brain scan, said my results were “ abnormal” for ALS. Then off the hospital for a lumbar puncture, blood test & 5 Day’s of infusion – apparently to see if I have MMN.

      Hoping I do as it is treatable. Only 9 days since the infusions, so probably too early to notice any change. I read that 4-6 weeks is the normal time span.

      Anyway, hoping for a firm diagnosis, whatever it is, so I can get on with dealing with it.

    • #117578
      Roz1
      Participant

      Been 3.5 yrs for hubby. IVIG working, every 4 weeks. He doesn’t sleep well and is weak when not getting enough, left leg and hand are weak still..best of luck to all.

    • #117579
      Janet Aubry
      Participant

      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.

    • #117580
      Peter Powell
      Participant

      Hi, thankyou for your kind words. After being pretty healthy throughout my life, being diagnosed with this, or something else? Like everyone else is a huge shock.

      Waiting to see any signs of improvement, but still a bit early I guess.

      My major concern is the impact on my wife who is from New Hampshire in the US. We had thought of going back at some stage and settling in your wonderful country. Not sure what the future holds now.

      Thankyou for the links, continuing my research and trying to stay positive.

    • #117600
      Jim-LA
      Moderator

      Live presentation – Wednesday, May 20, 2020 at 3pm ET
      Learn About Multifocal Motor Neuropathy (MMN) and Take Action: A Virtual Education Program
      for Patients & Caregivers

      This program will feature a multidisciplinary panel comprised of a neuromuscular specialist, an advanced practice provider, a patient advocate, and patient with multifocal motor neuropathy (MMN). Panelists will address key clinical issues diagnosis and living with the disease, treatment options, and actively participating in treatment decisions.

      We want to hear from you! The panel is already accepting questions, and will continue to take your questions through the live session:
      send them in today.

      Interested in learning more? Save the date, and register here now to join live!
      https://www.neurocarelive.com/app/signup/NCL_MMN_PtEd_052020/formPage/?refCode=GBScidp_mmn_email

    • #117616
      Judy Willour
      Participant

      I first noticed weakness in right index finger in 1990 & thought it might just be related to aging. (I was 54.) Gradually more weakness in right hand & noticed hollow between thumb & index finger in 2009, so saw hand specialist, who referred me to neurologist. After EMG he suspected MMN & tried loading dose of IVIG. When I didn’t respond immediately, he concluded that I must have an even stranger disease (monomelic amyotrophy), which generally only affects young Asian men, of which I am none. For the next 8 years, my right hand, arm, & shoulder atrophied & grew weaker & I started noticing leg weakness, as I read the same few paragraphs online over & over again about young Asian men. I finally sought a second opinion, & my new neurologist told me that it may take several months of IVIG to begin to see results. Over 6 months of treatment, I started to see improvement. Over the next 6 months of treatment (1mg/kg every 4 weeks) I seemed to stay the same. Over the last year I have varied between staying the same & getting weaker. I asked my doctor about experimenting with increased dosages or shorter times between treatments, but he was unwilling, saying he was following gbs/cidp guidelines. Recently I participated in the online MMN forum & asked a question about my issue. I was encouraged to have my doctor connect with the foundation for a doctor to doctor consult. So far I have called my doctor’s nurse & emailed my doctor & am waiting to hear back.

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