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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  • #112436

    Roz1
    Participant

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

    #112442

    Jim-LA
    Participant
    #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

    #116391

    Jim-LA
    Participant

    Yes Debbie, immunoglobulin (Ig) products are temporarily in short supply. An explanation can be found in the following article:
    https://www.primaryimmune.org/news/ig-availabilty-issues

    #116392

    Jim-LA
    Participant

    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.

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