Reply To: MMN anyone update on here with it?

June 7, 2019 at 11:04 pm

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.