Hello ,about to turn 50 and been diagnosed with progressive ms.
I think I’ve suffered for a long period of time but always found excuses as to why I have been struggling.
I’ve been thrown in the deep end and going to be starting infusions.
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Hi colrs75,
Welcome to the party. I was 53 when diagnosed withSPMS. Likewise to yourself, lots of previous hospital appointments with sore legs, joints, hips etc, the MS diagnosis came as a shock. It certainly knocks the wind out yourself.
The best advice I can give is to reach out for help and support. It took me a while to admit I needed help but I am glad that I sought it.
Counselling, local MS support group, MS friendly exercise classes have helped me to meet people in a similar situation.
Using this form has helped also, lots of MSers who have been there and done it.
Good luck on the journey and remember if you don’t ask you don’t get😃
EH
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Thanks for replying Ethan.
It came as a bit of a shock but explains so much if that makes sense ?
I take seizures and end up in hospital for a week which has happened a couple of times.
Got neurologist tomorrow then will start the infusions by the end of the month.
I sincerely hope you are managing.
Regards Colin
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Hi Colin,
Good luck with the neurologist and I hope the medication makes a difference.
It is a blow but past symptoms do start to make sense when you get the diagnosis.
I hope the medications can stop the seizures.
Good luck anyway.
EH
Hi Ethan
They believed the black outs was caused by epilepsy, it’s not so I was dismissed from that.
I’ve to see my nurse that has been assigned to me in local hospital rather than ambulance 40 mins away lol.
I am getting worse and my memory is shocking.
Argued that it was Monday today.
I’ve worked since I was 18 outside and being stuck in house is like a prison.
I am grateful for this site as I have felt lonely in a crowd of people, at least people like your good self understand.
Hope your doing ok
Kind regards
Colin
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Hi Colin,
Yeah it’s a shock to finally get it confirmed. On the positive side, it’s the best time ever to have MS with new developments all the time. So one thing I’d say is the information online can be out of date and try not to go OTT on Dr Google when you’re worried or bored (I have).
Which infusions are you getting? Ocrevus? You’ll maybe actually enjoy just getting the crack with people when you’re getting it, or just chill out. If it’s an all day one try not to drink too much liquid cos wheeling the thing to toilet is a pain (especially if it starts bleeping on the way there lol).
Totally get the house is a prison thing also. You may have been pushing pretty hard to keep going (I was) so know what it is and getting advice on how to manage it is only a good thing.
Just put a thing up or message if you’re wondering about anything. Plus there’s loads of information on here.
Kind regards,
Andrew
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Hi Andy
I’m
Finding it hard as had to give up my ghillie job ( taking privileged ppl fishing )
It was a relief when they said I had it as I was convinced it was down to my youth.
I am changing a lot of things like what I eat.
Lost my family start of lockdown due to the ex having midlife crisis so my 4 daughters don’t know .
Thank you your reply and you ll end
Up blocking me lol
I have a ms nurse but I am a fighter
Regards colin
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Hi Colin, just picking up on what you said about changing things . I’ve found ‘overcoming MS’ very useful. It should be called living well with MS but it’s very useful on diet, exercise, calming mind and body with meditation/ mindfulness and basically keeping healthy . Not going to bring an end to the MS but If nothing else it will keep you healthy and fit !
P.S I’ve had RRMS for some 18 years and suspect it’s drifting into secondary progressive ( to be honest I’m not at all convinced that there is any clear difference between RRMS and Secondary Progressive. With RRMS you get a bit of background progression between ‘ relapses’ )
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I would text the bairns Colin. The worst that can happen is they don’t reply.
It might help having some support.
EH
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Hi Ethan , I love my daughters to the moon and back ( sounds creepy now there older lol
I want them to want to see me and remember the laughter instead of feeling sorry for me
It was a very very difficult break up.
They appear content so I letting sleeping dogs lie. Perhaps it’s wrong I really don’t know I got diagnosed with prms so taking one day at a time
Hi Hank , I’ve worked outside for near on 30years and struggle a short stroll, but I fully intend on taking your advice and very much up for a fight
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Your shout Colin. Take it easy👍