To ask if anyone with Multiple Sclerosis wants to moan? Or others want to learn about MS?

I'm currently taking part in a research study into a treatment that is used in psychiatry. And they are seeing if it improves cognition. It's called TIM-S. omg my brain fells like it's just woken up after a really long deep sleep.

I had covid a couple of weeks ago and it's been a real struggle getting into exercise again- I feel like I really lose condition easily when I don't move for a while. I have to really push myself to get back into it because I know I feel much better when I'm exercising regularly.

Another thing is I'm now taking tizanidine 2mg three times a day which I understand is a low dose (told by the gp I can gradually increase to 8mg three times a day) and while my spasticity is reduced I'm really noticing lack of strength in my legs from it. I suppose I just have to work on building up my muscles. I really wish I could try sativex and see if it would relieve the tightness without the accompanying lack of strength- does anyone have any experience?

@DixonD i googled that the other night but tbh although I looked really hard, I couldn’t find £48k in my purse. 😉

@Redundantmum22 that sounds very familiar although living in the north of Scotland, summer doesn’t factor. I’m now at nearly 8 weeks off sick, thankfully for the LA who are more “understanding” - but realistically I don’t think FT work long-term is going to be an option. I’m only now after 2 months able to walk a few hundred yards unaided.

the PT jobs near me are all very physical and require an element of coordination. 🤷‍♀️

I know someone who went to Mexico for stem cell treatment for MS. She now lives a normal life (back to work etc). I do not know what type she had though, but she wasn’t able to work prior to her treatment. She paid for it through refinancing her home.

It worked for her, but there are so many variables with MS.

@Tara336
DS is my 15 year old. If DH fell we would be buggered cos there's no way we could get him up!
luckily DS is still just about "pick-up-able" thankfully!

Mine wasn't that painful. But definitely noticeable.

I lost half of my vision in the affected eye.

I had no idea this thread existed! I have MS, diagnosed in 2019 after rowing, lost sensation all down one side & my eyesight went dippy. GP ignored me the first time, the second time he sent me to the neurologist and the neurologist has been super.

I've had periods where I can't even walk from my office chair to the printer without someone helping me stay upright. 😳

But I've also had periods where I can run 5km, swim and cycle for miles.

I find that I'm worse in the summer.

Thr thing I struggle with the most is working. I tend to sheepishly leave my job if I'm really ill as I feel guilt reducing hours / doing less / being off sick (I don't want to be a burden!)... So I need a part time role but I think my CV looks like shit now and I'm finding it difficult to find a job.

Anyway, great thread. Thanks for starting it OP. X

I don't remember DP saying his ON was that painful. Was several years ago and not me, so I may be misremembering, but IIRC mostly his eye felt a bit… odd. Bigger? Wrong texture? Something like that. And the loss of colour of course.

@pinkpotty @ScrambledEggForBrains I always believed I was unusual in never having ON but I was told after having eye checks at hospital when I started a DMD that there is evidence that I have. I was under the impression its incredibly painful? I'm sure I'd have remembered it if I'd had it?

@ScrambledEggForBrains what's your situation like now ? Since diagnosis ? I have heard if ON is one of your first symptoms, it can be mild.

Same. Optic neuritis in my mid 20's, and second episode resulting in diagnosis (after MRI, lumbar puncture and evoked potentials test) in mid 40's

@PomBearWithoutHerOFRS I'm sorry to hear your husband fell, it's not a nice experience for either of you. It doesn't necessarily mean it's a relapse coming (or at least it doesn't in me) sometimes these things just happen. If he was having a hot shower then stepping out that could have caused it,my legs go like limp spaghetti sometimes if I get overheated, I'm fine a little while after. Hope all goes well at the hospital.

I'd love a thread about MS. I've had it nearly 6 years and struggle every day 🥺

Just a moan, an in need of shoulders to cry on a bit - DS fell getting out of the shower tonight. His leg just gave way. He said he slipped on the set floor, but we both know he didn't.
Now I'm afraid he's going into flare, or just generally starting some deterioration.
Am just telling myself it's hospital day on Friday, and he is often always that bit worse the week of treatment.

I totally agree. I went 3 years from CIS to second lesion and it felt like walking on thin ice. Even after the diagnosis I still feel like I am constantly living under The Sword Of Damocles. Never know what will happen next.

I get no real support and no guidance on what to do. Consultants want me to start DMTs but I’ve been waiting for over 18 months now, despite them knowing I am a single mum with 2 boys!

@@Tara336 you are so right! Coping with other people is the worst thing. I would be rich if I got a pound, every time someone told me what I should do about it.

@CosmopolitanPlease Without getting bitter and twisted, that one aspect does frustrate me! I’m almost glad that other people remember it was really the case!

“How to live with MS” - the advice has changed so much over the years. At the end of the 90’s the advice from my MS nurse, my neurologist and (like you mentioned) the guide books was to rest; to not over exert yourself. The emphasis was very much on avoiding any exercise that involved getting hot, sweaty or fatigued.

At 20 you do as you are told by the Doctor, especially when all other advice says similar. I was physically fit, active and capable but the advice was to rest or risk further relapses. My mountain bike was sold, my exercise classes cancelled and my life as a ‘disabled person’ began.
By the time the advice began to properly change, my disability level had progressed - I couldn’t run now if I had to! The campaigns declaring that an active life is best are now (rightly) everywhere. It seems almost unbelievable that the opposite was true. Most of the people in my life, including my children, have no idea of who I really was before this.

That said, in the years before I was diagnosed, having children used to be on the ‘no’ list too. Medical advances are amazing but it can be heartbreaking to be caught in between them - a family friend with MS mourned for the children she was told not to have. She died, still relatively mobile, in her late 80’s.

Yup this

Best username ever 😊

Now had it nearly 40 years, never been given a drug for it but hoping for something soon as now secondary progressive. My sister also has it and was primary progressive. If anyone has questions happy to answer.

How helpful for everyone on the thread who has MS. You shared this because?

The opposite is true of stem cell=HSCT. It does not repair any damaged myelin but it does aim to reset the immune system and prevent further inflammation/relapses and new disease activity.
that is why having it too late is pointless.

@TightDiamondShoes but you have to remember some people will manage that, others will do it and be floored for a week after or some just won't be able to even try. Right now I'm ok and probably feel the best I've felt in a very long time, but I doubt it will last and expect I'll be wrapped back up in my duvet sooner or later as that's the nature if the beast. It's not easy to live with MS

The thing I’m finding the hardest about FB groups is that they’re making me feel like a lazy fucking loser.

all the “yes I work full time on a building site carrying 2 bags of concrete under each arm, am a single mum to 8 and live in a shoe, ride 6 horses every day and run 3 marathons a week - anything less is just sheer laziness”.

I read this from my horizontal position and every time I walk to the kitchen I fall over.

@nowandnever completely agree! I also joined lots of Facebook groups when I was diagnosed and that was probably the worst thing I could do. They were full of people who were angry, doom and gloom and I'm considerably sicker then you, so none of them helpful or informative I now have a small group of friends that have MS and they have a similar outlook to it to me and we do support each other. I would say the best thing I did was avoid the dramatic MS'ers, have a positive outlook and positive people around you. Also be prepared for the stupid comments ie now you can smoke weed, my aunties cousins friend had it and they are fine/dead etc.

I always say coping with the MS is fine, dealing with other people is hard.