Last reply 2 months ago
Like minded people needed…..

Hi….my name is Lisa. I’m 50. Until the diagnosis with this life changing disease I was a gym goer….almost every day …. Ran from work….I never really sat down. I have progressive ms. Last year I had a stem cell transplant in the hope my disease would be halted…..it hasn’t worked. Its still slowly destroying my mobility. I am not dealing with it at all. In fact if it weren’t for my beautiful 11 year old son , who now lives with his Dad to give him a better life, I’d be booking a one way trip to Switzerland. I’m not depressed….just lost. ….

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vixen
2 months ago

Hello @lilyloo, I hear you and I get you! Was diagnosed three years ago aged 50, a complete surprise as no previous. I try hard to stay on top of things and keep going but a few weeks ago had my first tumble in the street, had to be picked up by strangers. Not just humiliating, but whacked with the realisation that this thing is here to stay and isn’t going to get better.

That said though, being diagnosed has led to dramatic life changes for me and my husband which have given us a better quality of life. I’m not depressed either, but it’s it’s not easy is it? By weird coincidence, my younger sister was also diagnosed at the same time so at least we have each other for support, although tbh we try to avoid talking about MS. Anyways, I’m like-minded I’m sure, and post on here a fair bit. I’m working from home at the moment and very happy doing that for now. Take care, here if you need support x


watsoncraig
2 months ago

Hi @lilyloo progressive MS here to and feel like crap. @vixen is right, a life change may well be required, I know mine might have to be more dramatic! Did consider HSCT but went against it as it’s loads of money and may not work (and a trip to Mexico and not lying in the sun is not my idea of a trip)


cameron
2 months ago

Has your neuro team got a treatment plan for you?

Hi Lilyloo I was diagnosed with primary progressive ms when I was 55 after 5 Yr of struggling with it not knowing what was happening to my body, but now I know I try not to dwell on what I can’t do but rather what I can do, I know it is hard but pls try to focus on the good things in your life as life is too short and too precious. Today I have conquered my embrassment and took myself to my hairdressers on my mobility scooter 🛵
I felt embrassed because I am only 59 yrs young and felt people would look at me on it and think I was just being lazy, but now I’ve got myself here I am looking forward to the drive home ☺
Don’t think about tomorrow just think about today and how much fun you can have ☺


lilyloo
2 months ago

Thankyou everyone for your replies. I have elements of everything you guys are saying….not able to hold a pen…the embarrassment of a disability aid…at 50!…I just can’t do it….not even the walking stick I need in order to get out the house. I just want to curl up and cry! This isn’t who I am….
I’ve had Alemtuzamab…and a stem cell transplant last year… Both haven’t worked.. my MS nuse is fantastic…but she can’t cure me.. u have a wheelchair rep coming on Monday…and I’m unsure I can do it!! I was a theatre nurse…and can’t work anymore…I loved my job…and was bloody good at it…I need to find a purpose to my life…MS has cost me my 11 ye old son….my older children barely have anything to do with me anymore….we were close!…my job…. running and sport….my social life. I’m hoping to find a way to be more positive….I was a smiley upbeat person….it’s taken that too…


rob_woodhouse
2 months ago

Hi all I am 38 and have had ms since I was 21 being diagnosed originally with relapsing remitting and now with Secondary progressive ms.untill the last 6 months I have not had too much of a problem health wise playing golf 3 times a week and working as a project manager for a large building company
My health has deteriorated quite dramatically now being unable to work because of not being able to stand for more than 5 minutes due to fatigue as for walking between lack of balance and drop foot is a near impossibility so I more than feel your pain ms is crap and I feel really hard done by.


lilyloo
2 months ago

Right….time be my old positive cheery self! I’ve taken out a bank loan and I’m getting a Terrain hopper so I can get out of this house….go to the beach….climb Snowdon!! It’s expensive but what price is freedom. I’m also making my own THC oil as I can’t seem to get it anywhere. Spoke to my GP this morning who unofficially confirmed it should help my spacticity. ..I’m taking back my life…and it feels good!!


vixen
2 months ago

Wow @lilyloo, what a turnaround! Love the way you snapped yourself right out of the doldrums!


lilyloo
2 months ago

Well ….I needed to hear the struggles of others as well as me. I haven’t really been in contact with anyone else that has it. I realise I can’t change anything and I’m trying to come to terms with it. I test drive a hopper on Saturday ….onwards and upwards….💪


lilyloo
2 months ago

rob_woodhouse…..is there a reason why you haven’t tried any treatments?


lilyloo
2 months ago

Is anyone in Cornwall or Devon? Would love a meet up…. eventually….


heather_louise
2 months ago

I’m 45 and was diagnosed this past February after struggling to get it figured out since last July. I feel much of the same pain/struggle. I’ve never not worked and right now I can’t. It’s hard to explain to others that don’t understand. Sometimes I look fine but I don’t feel fine. I finally got off of using a walker in December but some days I don’t feel very comfortable in my walking or doing much of anything. I’ve never been a home body, was always active. It’s tough!


rob_woodhouse
2 months ago

Hi @lillyloo I’ve tried loads of medications including oral steroids all the muscle relaxants under the sun I’ve now gone Bach to Gabapentin morning and night and dentrolene three times a day and amytriptyline at night I’ve tried cbd but to little effect think I nee the thc as well

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