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

[SatInTheCorner]

Such a difficult disability to deal with. Never knowing if you will wake up tomorrow not being able to walk, see, swallow, hear, piss etc. Some days I can't even communicate

Such shitty thing.

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

@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?

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.

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

Mine wasn't that painful. But definitely noticeable.

I lost half of my vision in the affected eye.

@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!

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.

@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 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?

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.

@Toddlerteaplease that sounds intriguing, can you tell us more? I tried googling but couldn't find anything.

One of the issues I struggle with, which I believe is caused by MS, is apathy and lack of drive. I can't cope with anything mildly stressful anymore and endlessly put off stuff that I don't want to do. I have little interest in anything beyond my now small world in which I exist.

It's being run by the university of Nottingham. I was contacted directly by them and asked to take part. It's very time consuming do you need to live close by. It's basically putting magnetic pulses through my brain. And then seeing if my cognition has improved. It's already approved by NICE for depression I believe and available on the NHS in a couple of places.

@CosmopolitanPlease are you on antidepressants? Sounds like you are depressed.

That sounds promising, I have an e-stim device which comprises of electrodes on pads to stimulate my legs. I'd better not try them on my head though 😂

I don't think I'm depressed, I just don't have any oomph. I'm quite content being at home, reading and watching tv and seeing just close family. I don't recognise the person I used to be ten years ago when I was working, keeping the house spotless, socialising and so on. Just have absolutely no drive to do any of it.

That definitely sounds like depression!

I know two people who have MS, one diagnosed age 21, had quite severe sudden onset of symptoms (couldn't walk, couldn't talk coherently) however, it was brief, symptoms resolved, she was on medication but stopped when trying for baby at age 25, she's 30 with 2 children, she still has annual reviews but I believe she's not had any flare ups.

Another woman I know diagnosed late 20s, her vision went poor, she lost balance and had tingling, weakness and slurred speech. It took her 5 years to get diagnosed (she said she had to present the doctor information about MS as they weren't taking her seriously). I don't know what her course of action was since was diagnosed but she is now 55 and she said she has not had any symptoms for 20 years and she's fit and well, she doesn't take any medications but is quite into her natural anti inflammatory things like prebiotic, turmeric and manuka honey etc.

I'm off sick at the minute with a flare up. Managed to persuade my manger to let me do non clinical work next week. So at least I'm around people. I hate being off work. I love my job!
Met a couple of people who didn't know I had it, and I really hate it when you get the 'shocked' reaction.
And while I'm moaning. I had to reschedule my next clic appointment, as I'm on a work course that can't be cancelled and needs 100% attendance. The next appointment they offered is autumn 2024!! I said I was happy to see anyone, they claimed not to Mike swapping consultants, I pointed out that they had changed my appointment 3 times and each letter had a different consultant on it!!

Ms is a cruel and gravely underfunded and not researched enough. When i was 8 my father sadly received his diagnosis during the early hours. In 1998. He was fine , he was a project manager had a mortgage and all of the experiences ticked off. My Dad is my hero always has been always will. In the last ten years the relapses began. He accelerated into a wall because his foot just would not move and every year he would be hospitalised and bed bound long term. He would always come home and be fearlessly determined to not ms stop him. Hes recently gotten more sick and had to have a catheter fitted due to enlarged prostate ( my dad is really proud and this has hurt his confidence) So the other week a ambulance driver (an angel) came to take him for a routine appointment to his ms consultant. She let herself in with a spare key my dad is on the floor covered in vomit unresponsive with a slow pulse. The ambulance crew were there immediately and she rung me as i am his only daughter. My dad has apparently had a load of seizures and unfortunately some mini strokes. I went to see him it was so hard fighting the tears. All he can say is yes or no . I said “ Dad i love you please dont be scared “ i saw him the next day and his face lit up like a kid on christmas “hi jade!” He could speak again! But does not make sense. My dad was such a smart and sharp witted man he is my spritual guardian, hes always encouraged me to be active he taught me how to spar properly and im sat up in bed with tears dripping cause its like my dads here but ive lost him at the same time . Im finding out tomorrow if he has had a mri yet as he was too agitated to cope with the procedure. He is being treated for meningitis also . Multiple sclerosis is a cunt no one deserves !

They have referred me for investigation to the neurologist due to some mild symptoms. I think they are concerned as I had "inflammation on the membranes outside of the brain" on my last MRI, but said they were not concerned as long as there were no symptoms.

Few years pass and I have been getting pins and needles, and almost tingling sensation in my hands and feet. My feet will sometimes spasm and it becomes painful. The tingling would also be down one side of my face at times. A few weeks back I had trouble walking as my left leg seemed to almost feel locked at the hip and unable to move. It resolved after a few minutes. I've also had troubles with swallowing water. I would frequently cough and splutter as I didn't seem to be swallowing correctly.

I told these symptoms to the GP, but due to them being mild and having little impact (bar some annoyance) I have been told there may be a wait of up to 5 years for an appointment.

After my last MRI, I am slightly concerned that it may turn out to be MS, even though I know its rare.

Ms sounds like Parkinson’s, under researched and under funded

@Nsky62 yes it is. And less support available. All o could think when I was diagnosed, was that if it had been a cancer diagnosis. There would have been a nice place to go, like a Magggies centre, with fluffy cushions, tea and people falling over themselves being supportive. Instead it was. You've got MS, off you go.

If you have a ms nurse, it would be good, I have a Parkinson’s nurse and find her to be helpful.
so far, my Parkinson’s is not too bad

This is what i find hard. I don't have MS but have a similar and rare condition (myasthenia gravis).. It often leaves me unable to walk/swallow/speak. But I think because people haven't heard of it/don't understand it, they assume it can't be that bad.

IME MS nurses are worse than useless- worse because they are paid to help us and don't, and they give the false impression that help and support are there to be had. My ms nurse doesn't answer the phone or reply to texts. I've had at least three, all various shades of chocolate fire guard.

I feel a lot better since I came to terms with the fact that I am the only person I can rely on to manage my ms, which I do largely through lifestyle. I research and advocate for myself. My ms is stable and no more than I can cope with after nearly 20 years since diagnosis.

Please, everyone reading this, do not be tempted to regale us with your gruesome tales of how your friends and relatives have suffered on this thread that is to support those of us with ms. Start your own thread.