lorag
4 years ago
Slow Progression MS

Well After being disgnosed with MS for 15yrs my neruro told me today that I have slow progression MS. He said this this because The past year my MS has just gone down hill. The first thought I had was that it means in 10 yrs I’m not going to be able to walk.

Of course I burst out crying walking to my car, I have tried everything but it doesn’t seem to be working, I just want to give up, I’m tired.

Just wanted to share this with people that understand.

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Anonymous

Yippee!!I have found you. Another person with slow progression MS. My symptoms are only fatigue and loss of balance. I have had MS for 24 years. You?

@lorag Don’t get too despondent babe. You just have to deal with things as and when they happen, so don’t jump to conclusions about what will be.

owww lorag.. big hugs and kisses coming your way… dont know what to say… we’re all just a tap away from you xx

thanks guys. My symptoms openminded is weakness off the right leg balance is shit, I have other symptoms but the list is too long ha ha and it just seeems to be getting worse. I feel better today just thought there is nothing I can do about it just gotta keep on going. Hoping tysabri can do something. I am more worried about my eyes cause I am building a house for myself and if my vision goes I’m stuffed with work and living on my own etc. You know just starting to make a life for myself.

I’m sure things will work out. If there is a willl there is a way.

@lorag You are in shock, give yourself time to digest this! This is the place to state how you are feeling and find support. Don’t feel you are on your own out there!!

Perhaps I’m wrong but I thought Tysabri was only suitable for MSers still in the inflammatory stage of the illness?? The other thing is to share what I was told at dx about the likely eventual progression to SPMS. The MS nurse told me that there is no ‘rule’ about how far progression goes – it may be actually very little. Thinking of you xx

Let’s hope “slow” is the operative word, progression wise.
Keep going lorag it’s the only way. X

Hi
Live in the present not the future so you can live your life and and enjoy it rather than being scared about things that could happen. No one knows the future and so it can just be very scary.

I can relate to your situation – dxed 10 years ago. I used a stick for a while; moved into SPMS 2010 and then in 2011, my legs gave up and have been in a wheelchair since then. I live on on my own too. But life is good. Ive kept the things which have always made my life feel great- friends, family, my job. And Ive got used to my wheelchair! It feels like ive got my life priorities right (which I never used to).

You need time to process the shock you’ve had, but you will move to a muuch better place..I’m sure of it.
The more you tell people how you’re feeling,the better. Emotions always worn better on the outside rather than stored up in your head.
x

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