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We want to hear from you: please tell us about your experience of the online community.

I’m 43,have MS and still at with parents

RavMS

I have mobility issues. I cannot walk around like how I used to.

All my friends are married and have moved out.
I feel like I’ve missed out

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RavMS

Missed out not in marriage but missed out in living my life.

WelshBlue

Hi @RavMS Have you got any hobbies, or things you'd like to do as a bucket list ?

43 is still young, and without knowing the stage of your MS ... limitations etc unsure what to advise

My daughter is 18 years younger than you with RRMS, so I can appreciate the impact it has had on you

Reach out here, there's a good bunch, who when knowing more may offer pearls of wisdom

RavMS

Hey,

I’ve got many hobbies. Music Production, Teaching online.

I also have RRMS and have had it for around 14 years. I have no pain with it which is a bonus. I just have Motability issues.

Has MS affected your daughter ?

Hannah_Alumni

Hello @ravms

Welcome to the community!

I hope you are able to find friends here! I'm so sorry you feel like you've missed out, but I promise you haven't! Is there a list of things you'd like to do?

RavMS

I don’t have a list because I take each day as it comes. I don’t like the feeling of being trapped in one place

Hannah_Alumni

@RavMS What are you getting up to today?

WelshBlue

RavMS said:

Hey,

I’ve got many hobbies. Music Production, Teaching online.

I also have RRMS and have had it for around 14 years. I have no pain with it which is a bonus. I just have Motability issues.

Has MS affected your daughter ?

Music production sounds really cool, do you mix your own stuff ?
Teaching online ... kudos to you for helping others in life. You should be immensely proud of that

Sorry to read that you have mobility issues, is this because of lesions on the spine or because of ones on the brain ? Can you walk or are you only able to mobilise in a chair ?

MS affects my daughter in leg pain primarily along with minor symptoms, so far she is able to continue her career as a Paramedic after getting her C1 driving licence back after it was revoked for 6 months after diagnosis and the relapse that she went through

We await the results of her annual MRi to see how effective the DMT drugs are being ... are you on any DMT treatment ?

RavMS

“Music production sounds really cool, do you mix your own stuff ?
Teaching online ... kudos to you for helping others in life. You should be immensely proud of that”

- Yes I mix my own stuff.

“ Sorry to read that you have mobility issues, is this because of lesions on the spine or because of ones on the brain ? Can you walk or are you only able to mobilise in a chair ?”

- Apparently I don’t have spinal lesions. It must be the brain.
I can walk but not very long. My legs fatigue and I need to sit and rest them out. I have a cane but

I waddle with that too.

” We await the results of her annual MRi to see how effective the DMT drugs are being ... are you on any DMT treatment?”

- What DMT is she on?
I’m not on any DMT. I was on Ocrevus until I got Sepsis and was hospitalised. I want to go on Tysabri. Just waiting for my Neuro to approve my request. He’s reluctant to put me on it

RavMS

Hannah_Scope said:

@RavMS What are you getting up to today?

I just got back from a coffee with friends. Was good seeing them and being out.

You?