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Multifocal Motor Neuropathy (MMN) - Phyllis's Story

  Рет қаралды 9,584

GBS-CIDP Canada

GBS-CIDP Canada

Күн бұрын

Пікірлер: 17
@tkqbb
@tkqbb 3 жыл бұрын
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.
@kevinbaxter7390
@kevinbaxter7390 3 жыл бұрын
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
@desirousdreamer3983 2 жыл бұрын
How are you now...brother may God help u out....
@MrSuperMint
@MrSuperMint 2 жыл бұрын
i feel your pain. i am also 56, slowly deteriorating - trying everything i can no
@dalenesbitt
@dalenesbitt Жыл бұрын
Your description of MMN is exactly the same as what is happening to my left leg. No pain, incredibly slow atrophy.
@dannylkent1170
@dannylkent1170 Жыл бұрын
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
@Myworldmymind908 3 ай бұрын
Have you tried ivig ?
@DavidSamuel7
@DavidSamuel7 8 ай бұрын
❤God blessings 🙌 🙏 ✨️ ❤️
@vincentkoech555
@vincentkoech555 Жыл бұрын
Thankyou so much
@dalenesbitt
@dalenesbitt Жыл бұрын
Do you have problems falling asleep because of muscle twitches?
@ourcollectiveinsanity
@ourcollectiveinsanity 4 жыл бұрын
why not rituximab?
@rebeccamike7770
@rebeccamike7770 4 жыл бұрын
So no treatment helped you?
@jenniferjarreau1214
@jenniferjarreau1214 Жыл бұрын
P
@loriclark505
@loriclark505 2 жыл бұрын
This is not helpful
@alipgreene
@alipgreene 2 жыл бұрын
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
@Yinyanchant Жыл бұрын
We’re you expecting her to give you a cure? It was helpful for us.
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