Last reply 2 months ago
Just saying helo :)

Hi everyone.
My son has MS. Aged 39 Matt’s symptoms started 5 years ago with him saying during a Sunday family dinner “My hand feels a bit numb”.
He is now a full time wheelchair user and has returned to live at home with us as his wife decided she could no longer cope with his care.
Matt has two kids (7 and 10) and was a Tree Surgeon/Farm worker/Printer/LPG fitter prior to MS taking hold. He hasn’t actually worked for 8 years as he broke his back in a work accident. He recovered from that (Rods and screws etc) and was ready to restart life when he had the numb hand incident.

He has been on the full range of MS drugs at various times but has not responded to any. He voluntarily came of the lasy (Tysabri) 18 months ago and massively cut down on his other daily drugs.

We are waiting for a Council grant to (hopefully) come through to build a downstairs wetroom and space for Matt. At the moment he can transfer and I installed a stairlift for him and we have a bathroom hoist, power and manual wheelchairs (WCS) and I adapt whatever we need to make the cottage work for us all.

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2 months ago

Hi @iain_sherriff and welcome. It’s good of you to join us on behalf of your son.

He’s lucky to have you as life can be unkind. It knocks you down and when you pick yourself up, it knocks you down again.

Unfortunately, there aren’t any drugs that can treat Secondary Progressive MS (SPMS) yet. There are some in the pipeline, so watch this space. Otherwise it’s just medications to deal with symptom management.

Good luck with the Council grant. I hope it comes through quickly so you can get this work started.

2 months ago

Matt was classed as Relapsing Remitting for the first few years, in fact he still officially is so he could have options if/when new drugs appear……….. his consultant has always said “your symptoms are atypical and whilw I am not 100% sure it is MS I don’t know what else it could be”.
We are waiting to see anew consultant !

2 months ago

Hello @iainsherriff, welcome you you and your family. That is one horrible journey your son has been on. Yes, there are several options in the pipeline for SPMS and the world of research has accelerated rapidly, as Iā€™m sure you know. I hope Matt gets to see his children regularly, and you your grandkids?

There are lots of SPMS folk on here. Have you used the map facility above to see if there other Shifters in your general area? I hope you get a response regarding a council grant soon, all the best for your onward journey. Matt is lucky to have you joining his fight as an MS Warrior šŸ™‚

2 months ago

Hi @iainsheriff and welcome. How nice of you to join us on behalf of your son, here’s hoping he feels able to communicate with us himself eventually.

We’re all quite safe here, huge range of ages, types of ms, experiences, you name it we’ve got it or have had it so there’s lots of help if necessary. And as I’m sure you’ve been told, with ms there’s no such thing as a silly question!šŸ˜œšŸ‘‚šŸ¤™

2 months ago

I’m glad you’re getting a second opinion. Let us know the outcome. Sending big hugs xx

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