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My Mum Just Diagnosed With Chronic Progressive MS

Hi,

My mum eventually got to go for her MRI scan last month and got her results on Wednesday. She has Chronic Progressive MS he said and has been referred to a Neurologist when they send her a letter. She’s 60 this year.

Me and my OH live with my parents at the moment and were planning to move out early next year, living here was a stress beforehand but now it’s unbareable in here. My mum and stepdad are crying and hugging all the time all I can think of and read online is worse case scenarios and am so stressed and upset and depressed right now. We have no friends or any family around here and my sister now lives 200 miles away, I feel so alone. I only have my mum stepdad and my OH and have such anxiety about anything happening to any of them.

I have had to watch three other close family members including my dad die slowly and painfully with other degenerative diseases and to think that is going to happen again is just making me feel sick all the time, I haven’t eaten anything much in the past three days or slept well.

Her symptoms at the moment are dragging her leg so finding walking a challenge, she drops things now and then, has falls outside, gets tired I think easily.

I don’t know what else to say here, just finding things very difficult at the moment and can’t stop thinking of what could happen again.

Thanks for reading.

Hi Lilly

I am not a carer but I wanted to say welcome.

You have a great deal on your plate. I hope you use the forum and all the wonderful people to vent, get advice, and for support.

You probably are aware of some of the help that is available given your family history but please consider contacting adult services to see if you can get some assistance.

The GP should be able to refer your mum for evaluation of her mobility issues and consequent falls.

Best
Tu

Hi Lilly

MS itself is not often a life-threatening condition. I suspect that it will put a strain on other organs that may reduce overall life expectancy. I am not overly familiar with your mums type of MS, my wife has had MS for 30 years now, but started with relapsing-remitting and moved on to secondary progressive. She was recently hospitalised for a procedure to do with her MS and they were quite surprised to find her blood pressure and other viatl signs all in the pink.

Pain is not something that everyone with MS has to endure either - for some it comes and goes and some hardly ever experience it, like my wife.

Your concerns are very understandable, but perhaps it might be time to stand back a bit, take a few deep breaths and do some reading about the specific type of MS that your mother has - there is plenty of extremely good literature on the MS site - all freely available to download. One thing about MS that you will discover is that no two people have the same overall symptoms and the course of the illness is as varied as people are.

The only piece of helpful advice, as such, that I can offer is not to worry about what you can’t affect - ie the course of the MS. What you can affect is the overall well being of your mum.

Regards.

Hello love. i do feel for you and all around you.

I am also 60 this year, like your mum. It sounds like she and i probably have the same condition. I was 45 when I began with problems.

Although I am still awaiting a dx, I can identify with your mum. as it is all new to you, you will need time to get your heads around it.

I am so sorry to hear you watched other family members decline with degenerative deseases. Yes, there is no cure for MS and yes, a highly progressive condition is very scary.

But, on a positive note, there is still a good and long life to be enjoyed for your mum. Make sure she gets help in the form of an assessment from an OT. This way she will be able to learn about methods and equipment which will make her life safer and easier. She will need rest periods and activities will have to be planned, allowing for rest periods, both before and after the event.

If she needs help with personal care, why not think about Direct Payments? I`ve been using this to fund carers for a year. it gives my hubby a much needed break from caring for me 24/7. This will also give you some peace of mind to know your step dad is having a breather too.

If you`d like to know more, please ask, yeh?

much luv Pollx