Last reply 3 months ago
MS is getting worse!!!

I have had MS for almost 22 years and things have taken a turn for the worst!! First off I am into walking outside for five miles for exercising, swim eighty minutes the other days to cross train! I can no longer walk out side at all this has happened all within the last six to seven months!!! My legs won’t work period which makes me so angry 😤! My bladder has always been a problem but within this time period this too has gotten worse! I also have epilepsy and I just had a seizure last week I am wondering if my MS is just getting progressive because I am 60 now and have had it a while? A little worried 😟.

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4 months ago

Ughhh I totally get it I’m about in the same ship as you & it sucks! I’m a fitness instructor and am now only teaching 1 time a week and take class 2 times a week! Everyone says, but look how lucky you are you’ve had MS for 12 years and it’s only now that it’s getting bad! Really and most of the time it’s my family that says it to me! So I should be happy I don’t do much of anything it sucks!

4 months ago

@sherry_bell , I can understand your concern at this sudden deterioration of your capabilities, having been so active.

Yes, you could have transitioned to Secondary Progressive (SPMS), but that doesn’t suggest a sudden deterioration. I’m just wondering whether you’re harbouring an infection, which has made your symptoms flare up. Not a relapse, but a “pseudo-exacerbation”, a temporary flare, whilst your body is trying to deal with this infection.

One possibility would be a Urinary Tract Infection (UTI), which has the capability to debilitate you. Especially as your bladder has been giving you problems too.

A urine and blood test at your Doctors would eliminate this possibility.

3 months ago

Hi @sherry-_bell, have your neuros said your transitioning to spms? I’m in the same boat, had the beast for 26 years, was told that rrms would become spms in 10-15 years, it took 23 so not complaining but this last 18 months has been a whirlwind, had to buy a mobility scooter, given an electric wheelchair by NHS, had a ramp and a ‘through’ lift installed by local council, all good but the local ms specialist wont actually call it spms, that might be because that then cuts out use of certain drugs and perhaps they’re still living in hope? Am 62 and having been on my feet for all those years, helping to bring up children and grandchildren, going on holiday, walking the dogs etc., still do all these things alone with adaptions. There’s ways round almost everything so don’t give up, keep on living as normal a life as possible. It might be transitioning, but only your neuros can really tell, they’re the experts, so ask them. Lovely to meet you and talk, long may it continue👍👏😜

3 months ago

Hello @sherry_bell, whatever age and stage, I think we can all identify with the ‘downgrading’ of things we used to be able to do. So, at least lots of people on here will identify with you and understand. Are you being monitored by your team, if not, can you book in for a bit of a check up? I hope you’re managing to rest up and take care of yourself x

3 months ago

I want to first thank you all for responding to me that was very kind of you. I may have been blessed to have my legs and been able to walk up till now but MS has not been all so good to me, it has given me epilepsy. This has taken my driven license away my career, everything. I now live with my mother waiting on my disability to come through. Now it is coming for my legs and still giving me seizures so the good times still keep going on. I see my neurologist in Feb 7 so it is just around the corner. I think I am going to ask to ask for cannabis instead of pills for both my epilepsy and MS. Anyone do cannabis for their MS?

3 months ago

Despite all the hype about cannabis being legalised for a few diseases, ms included, you can’t get it. Asked my ms nurse, she held up her hands and said so many ms sufferers had asked in the last few weeks and she cannot access it. I enquirer at my gp’s, it turns out that it depends on your gp. Apparently they can choose not to be involved if it’s against their principles! Great news! Can’t change my gp cos no other gp in the area will take me on, let’s face it, hardly surprising when you’re 62, have ms and cancer, the surgerys budget won’t take it. Oh the joys of living in a country that has a postcode lottery on edical services👹🥊

3 months ago

I live in Washington state and it’s legal so it’s available constantly for me I’ve been using it to try to get to sleep and for some darn reason it doesn’t make me sleepy it makes me want to talk talk talk talk talk talk talk. They’re trying to help me the people that work there so far haven’t found the one that’s going to help me sleep however it does work on pain. I’ve been trying that edibles and still they’re not making me go to sleep. The one thing that I can count on is Xanax but apparently we’re not supposed to rely on that for sleep according to my Dr.

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