Anonymous 15/01/18
Last reply 6 months ago
Hey

I have very aggressive RRMS and it’s very hard to handle at times. Would love to talk with someone that understands me.

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edmontonalberta
6 months ago

@dominiqueg

Hi – it might be easier to answer your questions if we knew something about you. You live in eastern Canada – this is on your profile.

In a relationship, or not… Working, or not… In a wheelchair, or not… Do you prefer sports, books or video games? You state you have very aggressive RRMS; what does that physically mean for you today?

To see who might understand & be able to support you, information would be helpful…


Anonymous
6 months ago

Well I don’t think knowing about my hobbies would make someone be more understanding. But yeah I guess I can answer the other questions.
I work, not in a wheelchair, I’m not in a relationship and I have multiple problems related to my ms I have constant pain and I can’t feel half my body.
Hope this helps.


edmontonalberta
6 months ago

@dominiqueg

Actually, people knowing about your hobbies might help. I played sports my whole life – I understand & bond better with active people. Artists; not so much… LOL

PPMS is different than other variations. My Neurologist described it as standing on an escalator that never stops; other forms of MS are like going up stairs – drugs help temporarily; sometimes for decades. But PPMS never stops.

The good news on my end is that I am on a slow MS escalator; I suspect a wheelchair is a few years away. So I am very comfortable enjoying life until the wheelchair appears. Then I will worry about it…

Painful leg cramps (my screaming wakes up my wife) in the middle of the night I understand; the rest not so much…

Good luck!


nutshell88
6 months ago

Hi hun
You’re not alone most of us been there.
Dont let it beat you as a string individual. Thats rule number one.
You better have loving people on your real life social life as a mother sisters prople u can trust.

In 2005 i was daignosed i guess u read this before
I didnt get any relapse till 2010 because those 5 yrs inbetween i didnt know i was daignosed pain in bottom half of my body lost ability to taste in half of my tongue so everything yummy i used to like i couldnt stand eating at all it was horrible lol and each time it gets healed it switch to the other half
Got double vision many time more than i can remember
All my life i used to put my thiegh above a pillow lol and arm pillowbthe pillow under my head
I couldnt do all these things in 2010 to 2011
Couldnt hold a pen or open a bottle of water
Went to america neuro said i better take tysabri or i’d be bed bound in the end of 2011 i cried in the hitels bathroom alone but mum found me felt a wee bit week
Therefore i stopped all treatments till today
My symptoms stopped just like that for years they never harrassed just like the years between 2005 -2010
My ms is not kidding in my brain its doing a mess and caused atrophy but no symptoms apart from year before yesterday i traveled to Riyadh city and in the way i lost all my ability in the right half of my body i was in wheel chair for a day called my neuro she said do physio you are fine and string did it couple of days and im fine now again there is slight pain
But oh well all humans gonna age and feel it eventually 😉 something i didnt say im saudi and between 2012 – 2015
I was in scotland studying english and working at citizen advice with no treatment 🙃 challange it because if u dont snd if u give up the nerve will guve up too revive it best u can but dont push it so much

Have a happy life 😉 and good luck with ur ms journy


Anonymous
6 months ago

I guess this isn’t the place I thought it was and I’m sorry but yes I have family and friends but none understand. I do everything my neurologist and physiotherapist tell me to do but then at the end of the day I’m alone dealing with all of this I haven’t had ms for a very long time I’ve only had it for 5 months now. I really thought this was a place where you could meet people that are going through what I am and a willing to exchange stories and have a discussion but I guess that this isn’t what it’s about.


stumbler
6 months ago

Hi @dominiqueg .

MS is a complex condition, causing a myriad of different symptoms. We all seem to suffer with slightly different manifestations, but it is classed as one condition.

The range of symptoms experienced are detailed here :-

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/symptoms

It is important for us to understand what is going on and what can be done to both manage the MS and control the symptoms. Then we can advocate the direction of our treatment.

I’m a little bit older than you. OK, a lot older. I can track my MS back to 1985, or earlier. If I knew then what I know now, things could have been a lot different.

But, that’s all history. You just have to get on and plays the cards you’ve been dealt.

I worked fulltime until 2006, but find my life somewhat constrained now. Lethargy on my part doesn’t help, but it keeps me “happy”-ish.

We have to plot our own course with this condition, but that’s what life is all about. Your life’s aspirations and ambitions are still possible. It’s just that you may have to reconsider how you achieve them.

We’re all capable of talking and understanding. But, you are so much more than your MS. Hence, the previous questions. We’re just trying to get to know you. 😉


Anonymous
6 months ago

@ stumbler
I actually believe that I don’t have to change anything to achieve my goals. I just feel like an outsider here because I want to talk one on one with someone and I believe everyone can learn from anyone and the difference we have are what makes for a great conversation. So in the end I believe knowing me more personally is something I’m more comfortable sharing one on one.


stumbler
6 months ago

@dominiqueg . that’s the spirit. Never lose those ambitions and aspirations.

No-one is an outsider here. The forum is like one huge family. Whilst we don’t share the same name, we share the same condition. The forum is very informal. You use it how you want to use it. You can be as anonymous or as open as you feel comfortable with.

If it is one-2-one support/friendship/companionship that you are wanting, then the local branch of the MS Society may be able to provide that.

Otherwise, in this little part of cyberspace, we are all your friends, to support, empathise, share, whatever you want. 🙂


zoeb
6 months ago

Hi there, you mentioned that you want to talk one on one with someone who understands you. I know that there’s a buddy system that Shift.ms offer. I think that might be what you’re looking for!
https://shift.ms/find-a-buddy

These are people who have ms themselves and who will Skype, email or text chat… whatever you need.

It can be difficult to build up those kind of relationships on the forum, but there’s always people on here that are looking to help.

Zoe x


Anonymous
6 months ago

@zoeb
Exactly what I was looking for thank you so much.


zoeb
6 months ago

Great! I thought it sounded up your street @dominiqueg , I know a few of the buddies, they’re lovely! Hopefully you’ll find your buddy match soon 🙂

All the best
Zoe

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