Last reply 7 months ago
Recommended read MS Jan Devries

I was diagnosed in 2001 totally panic as at the time drs told me they couldn’t do anything ? I am very stubborn you say that to me it makes me come back fighting.

I searched everywhere read everything and the one thing that help me was this book kept me positive and made me feel like I could be in control.

I stopped eating diary, gluten and sugar and it is the best I had ever felt no drugs only odd symptoms and a few times had optic neursis. I had a period of stress with my daughter and went back to my old eating habits and symptoms returned now they told me I had secondary progressive MS but after a MRI they say RRMS. Ssince October 2017 I have been having fatigue issue cant walk to far and now they suggest I go onto Tecfidera which I am reluctant to but I will as I have a 11 year old daughter but have also gone back to my good eating habbits along side the meds.


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8 months ago

@lmagnan , a lot of the identification of the type of MS one has seems to be somewhat subjective. But, that is understandable given the unpredictable nature of MS.

It would seem that the latest MRI revealed some more MS activity, so adopting a Disease Modifying Therapy (DMT) would seem a reasonable way forward.

Good luck with it.

8 months ago

Thankyou stumbler hopefully it helps me in some way ☺ thankyou for your comments ☺

7 months ago

Dear Poppy, is now the time to get a mobility scooter or a 3 wheeled trolley with seat? Our local charity shops are always having mobility aids in, they go quite quickly but a couple of the church ones will add you to their waiting list and give you a call if anything comes in. Worth investigating so you don’t have to miss the sports day😍

7 months ago

Hi I was daignosed in 2005
my parents didnt tell me i have MS I was so young and busy at highschool.
I knew after 5 years I got a relapse
regarding to dairy I’vr never been onto one
I’ve always bre extremely skinny an feel full so qui who I dislike
I’m not on on medication
Still unsure about which one is saw an ad they are they safe on my heart liver lungs or even the brain itself in the long run.

I hope you get better for your saw snd dsughter’S

Be safe

7 months ago

Thank you Grandma and nutshellxx
MS nurse ordered me a chair not arrived yet but dont want to scare my daughter as she does not know I have MS. I dont think she would cope (she is 11) at the moment she is going through a hard time at school and is staring secondary in September plus her nan(mother in-law) has dementia and she has struggled with that just dont want to add to her worry. Her dad is going to go to sports day with her o someone will be there for her x

7 months ago

@lmagnan , our kids aren’t stupid. They know when things aren’t right and, if they’re not told the truth, then they might be having nightmares second guessing the situation.

Our children like stability and the thought if potentially losing a parent is horrifying. This might be her present thinking, so being honest may be doing her a big favour.

Here’s a link to an online version of a booklet designed for your daughter’s age group :-

Have a read and if you think it’s appropriate, you can order a free hard copy from here :-

It’s called “Talking with your kids about MS” and you’ll find it under the “For Families” tab.

7 months ago

Thank you Stumbler I know you are right will have a look at the links and pluck up the courage to talk to talk to her 🙂

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