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Recently Diagnosed (slightly worried)

Hey guys and Gals this is my first post on this forum sio I am not quite sure what to expect.

I was recently diagnosed with PPMS which wasn’t too much of a shock really as I alwayts new something was wrong. I have always been slightly unsteady on my feet and had very shaky hands.

After reading more about MS I thought back to my life and rea,lised that I have had a few of the conditions associated with MS and not realised what they were I’ve always hated walking and got tired very quickly I have alsohad other complaints related to MS and just thought they were something else.

A few years ago a specilist thought I was dyspraxic then a different specialist said it was ataxia and then that progressed into PPMS.

I have been unemployed for about 6 years now and am struggling to find work. I have been keeping myself busy with volunteering with special needs children and more recently a local blind group.

I try to keep from feeling down as I see people with a lot worse cionditions just getting one with things and not letting it bother them so Itry to take the same attitude.

I am also very grateful of the help that is out there for people with MS nd also that it will helpme get my own place as I really hate living here and am really starting to struggle wuith the stairs and all the steps here.

I am slightly worried though that I will end up needing a wheelchair permenantally and am also worried about how it will affect the career path I have chosen to re-train for and that is woirking with children

Hi Jon

Welcome to the site and our support community, you will find everyone on here really wonderful!

Sorry you have been diagnosed with PPMS. I am undiagnosed but strongly suspect I have relapsing PPMS and I too am very worried about the future. I think I’ve had symptoms going back 40 years but getting the medical people to understand and believe me is a different matter! I’m currently off work, been off for three months and was hoping to go back at start of July but my employer has rung me and I have to go in for a meeting next week. Think I will be made redundant, it’s been hovering for a while and I guess my sick leave has just exacerbated the situation, but a bad relapse at Christmas left me with loss of vision in left eye and permament bowel incontinence, now under control with baclofen.

If I lose my job I too am worried about finding work so am trying to explore other possibilites like starting a business that I can run from home, some sort of internet based business. It’s early days but I’ve always worked for 34 years and hate being idle! I would like to move to a bungalow but they seem so expensive!

I’m sorry I haven’t got any advice for you but stay on the forum there are loads of lovely helpful people here who you will find you have lots in common with.

Stay positive and welcome once again! Dianne x

Hi Jon and welcome!

I have RRMS so don’t know about PPMS.

What I can say is that whatever type we have, the condition varies for each individual.

I have had times when the future scares me, what will this disease do to me and when.

No one , not even the Neuros can tell us.

My advice would be kind to yourself, adapt your life accordingly (afternoon naps, change working hours etc) read this forum for so much advice and tips.

And when you can, this will get easier as time goes on, just think about today and the near future.

Life can change overnight for anyone, MS or not, although being realistic, more likely to change for us.

I wish you well.

Clare