Multifocal Motor Neuropathy (MMN) - Phyllis's Story

[@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.

[@dalenesbitt]

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

[@kevinbaxter7390]

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

[@desirousdreamer3983]

How are you now...brother may God help u out....

[@MrSuperMint]

i feel your pain. i am also 56, slowly deteriorating - trying everything i can no

[@dannylkent1170]

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 🙏

[@Myworldmymind908]

Have you tried ivig ?

[@DavidSamuel7]

❤God blessings 🙌 🙏 ✨️ ❤️

[@dalenesbitt]

Do you have problems falling asleep because of muscle twitches?

[@ourcollectiveinsanity]

why not rituximab?

[@vincentkoech555]

Thankyou so much

[@rebeccamike7770]

So no treatment helped you?

[@MorleyJamie-t5k]

Hall Kenneth Wilson Laura Walker Mark

[@jenniferjarreau1214]

P

[@loriclark505]

This is not helpful

[@alipgreene]

I think it's very helpful to hear a patient's journey. It can make you feel heard and represented, and it's interesting to hear the onset of her symptoms and how she's dealing with her illness right now.

[@Yinyanchant]

We’re you expecting her to give you a cure? It was helpful for us.

[@Tom-in6fk]

@@Yinyanchant aren't we all hoping for a cure? would be nice.