When Relapsing/Remitting takes a down turn

Hi

I was diagnosed back in 2,000 with Relapsing/Remitting MS. I have had the usual mild symptoms of fatigue, some cognitive issue, bladder and digestive issues etc

However after a brief bout of covid around 18 months ago. I found that IO had developed a limp. After a few weeks my leg returned to normal.

The problem reoccured around six months ago and has got progressively worse. I have lost a lot of use in my right leg and also seem to have drop/foot.

I am finding that I am becomingness mobile everyday and and am increasing anxious about the future. I am a young 64

Have any of you experienced a similar experience of living a reletivly normal life with MS to one of increasing diabilty?

Mark

I have drop foot and am awaiting a physio assessment. I am becoming less mobile everyday and my world is becoming smaller. My whole life has changed quite dramatically.

I am not sure how to get advice on treatments and what is available to me to help with my situation.

Can anyone please advise?

Thank you

Mark

The best solution to drop foot I have found is the remarkable FES and your GP can refer you for assessment.
Physio is a great idea and will help to keep your muscles as strong as possible.

Functional electrical stimulation (FES) | MS Trust

Thank you for getting back to me. FES is what I was thinking of. I am being booked for an assessment by an MS Physiotherapist and I’ll bring it up with them when I see them.

Thanks again, very much appreciated

Mark

Thanks Whammel

Things have moved on quite a bit. I had a new MRI which showed showed some new scarring and I’ve been re-diagnosed with S.P.M.S I mentioned the FES to my doctor and finally got an appointment which was for the end of September.

I messaged an MS Nurse and asked her if I could put my name down for any cancellations and amazingly I did get one for a few days time

Thanks for getting back to me and I’ll keep everything crossed for the FES trial

Mark

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Thank you for getting back to me. I now have my FES which helps so much. I am finding not hard to motivate myself to do the exercises that the physio gives me but I know that it’s important. You really feel like you’re on your own with it which can get you down. I need a more positive outlook but am coping…

Sorry to hear of your difficulties Mark. I was diagnosed with ms in 1991 - I’d had occasional bits of numbness since 1989 but my excellent GP arranged for me to go into hospital and I got an MS diagnosis. Not that I believed it as all I’d heard about MS was how it destroyed lives and what it did to Jacqueline du Pre. I had no symptoms at all at the time.

I believed it in 1996 as I had a relapse. Every day for a week, new symptoms appeared. By the end, I felt my ribs were being crushed, my hands were almost useless and I could barely walk. The following week I gradually started to improve. I was back in hospital for a few days. Then straight back to work! That’s the only major relapse I’ve ever had!

I got almost completely better - just a slight tingling in my hands. I still went on cycling holidays, did quite a few 10+ mile walks with a couple of people who enjoyed that sort of exercise. I belonged to a gym and loved aquarobics sessions, swam and enjoyed using the cross-trainer.

After a time, I noticed my balance wasn’t quite right and eventually I started walking with one of the trekking poles I’d bought for use in the Lake District. That must have been in about 2016. Apart from that I was still fine. I’d moved home, was able to shift furniture around, could mow the lawn, go for walks, travel abroad - just with a bit more care.

And then came Covid! The gym closed, no more travel, pubs, clubs and cafes all closed (except a few takeaways). There was little incentive to go anywhere. And that was when ms started to get its claws into me.

My balance is a lot worse and I have to use both trekking poles to get around. My right foot runs out of energy really quickly (like a faulty battery). I have to be really careful getting on to buses and I phone through for a buggy ride at main stations. My hands have got worse - lifting kettles of boiling water (I really have to concentrate and only half fill them). Handwriting now a scrawl.

I’m 72 now. There are still plenty of things to enjoy. I love reading and attend the local library’s reading and poetry groups. Also their games afternoons and the knit and natter group (I can still knit and am halfway through a jumper). I also like doing jigsaws. I still enjoy short walks, visits to cafes (I love really good coffee), there’s a really good curry house not far away. And I still get out to meet friends or they come to visit. And there’s still all the usual stuff, tv, music, radio, computer etc. I’m also thinking about getting a mobility scooter so I can get a bit further afield.

Good luck! And all the best!

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Hello Caroline

Thank you for your reply. It’s good to hear from others about their experiences with MS.

I also used to like to walk and cycle a lot. I would often do a sponsored walk for a charity. I was also a dog walker but I’d only walk one at a time. I am quite restricted now and get constant pains in my leg and feet, I take cbd oil when I can and this seems to dull the pains a bit

I was interested in what you were saying about going to the library to poetry events. I’m a bit of a poet myself, I performed for around 12 years and occasionally still do. I stopped when covid struck and then I went into secondary progressive ms I could still perform and intend to at some point

I am also a writer of real Western haiku and have two collections on Alba Publishing

Ghost Moon and A Portable Universe

I’d be happy to send you a free copy of APU if you can send me an address to send it to? It’s not the haiku that we’re all told has to be 5-7-5 for good reason

I am 64 and am still getting used to the idea of losing some of my mobility

Thanks again Caroline

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Hello Mark,
I was dx in 2000, I’m 42 now.
RRMS (Down-UpMS) was manage-able up until brain haemorrhage 4 years ago, never quite fully recovered; MS gradually started to slide downhill too --just like a snowball effect.
I’ve been getting around with 2 walking aids ever since and experiencing all the symptoms you mentioned above; it’s probably what to expect in disease progression I guess.
I did have a fes but I returned it when I wasn’t using it over covid lockdown; physio said as long as you keep doing your exercises, then you should be fine.
Now I’ve newly started Kesimpta, I’m not expecting to become Benjamin Button by next year but hopefully it will halt all those devastating relapses.
Positive mental attitude all the way!
Best regards,
JP

Thanks for getting back to me JP. You seem to have a very good positive mental attitude which is encouraging.

I am adjusting to my reduction in mobility and don’t go out much anymore. I’ve also started to get cramps pains in my legs and feet. This is usually in the evenings? I am awaiting my drug that is supposed to reverse the process to. I was amused by your Benjamin Button comment =;-) thanks