Multifocal Motor Neuropathy (MMN) - Phyllis's Story

To learn more about MMN, GBS and CIDP, please go to:

#mmn
#multifocalmotorneuropathy
#cidp
#mmnawareness
#livingwithmmn
#mmnsupport
#mmnadvocate
#patientadvocacy
#plasmapheresis
#mmnwarrior
#gbs
#invisibleillness
#autoimmunedisease
#chronicillness
#IVIG
#ivigtherapy
#gbscidpfoundation
#gbscidpawareness
#peripheralneuropathy

[tkqbb]

Thank you for sharing story. I was diagnosed MMN 5 years ago. Since MMN is rare also in japan, this is the first time see someone have circumstances.

[kevinbaxter]

Each individual will be different. Meself nearly 5yrs with GBS, recently aswell diagnosed MMNCB. Unfortunately my nerves have demylinated to far. Yes had ivig but temporarily ease symptoms. So balance issues, essential tremor in both hands, two crutches, climb the stairs like a two Yr old. Am 55 male it's totally destroyed me physically mentally socially financially. I battle my own rehab daily. Get all the information you need don't get pushed away by doctors and Neurologists. From working playing Rugby cycling gym it's hell. Best wishes for all suffering

[dalenesbitt]

Your description of MMN is exactly the same as what is happening to my left leg. No pain, incredibly slow atrophy.

[dannylkent]

I have had MMN for 10 years now I am 36 and it took me 7 years to get a proper diagnosis and treatments don't work. It's extremely challenging and wish all of you struggling with this horrible disease the very best 🙏

[priscillanocelli]

Well, I'm from Brazil. My mother recently, after 16 years from the first signals of the desease, got the diagnostic of MMN, but now she has a generalized muscle weakness, despite of she has been very physically active for all this time. She doesn't walk anymore and needs help for every activity. Now we are seeking the human Immunoglobuline treatment, but in our it's very expensive and difficult to find a doctor that can help with it.

[dalenesbitt]

Do you have problems falling asleep because of muscle twitches?