Struggling a lot

[jmr]

I’m struggling so much. Diagnosed for a year. I can walk 10/15 mins very slowly on a good day before foot drop. If a hot day it’s 2/3 minutes.
I am permanently dizzy. I’m unable to walk in a line and weave across the pavement and bump into people
I have urinary incontinence
I have double vision that comes and goes
I have nerve pain down both arms
I have leg spasms at night
I’m exhausted
I have dreadful brain fog. I said the other day sticker instead of lid.
I just want to hide away
Poor sleep yet so exhausted but can’t sleep easily

I fear what’s next and I don’t want to experience this anymore. I can’t carry on like this. I was the happiest I’d ever been before this and now so incredibly low I just hope to not wake up.

[jthatcher]

Hi @jmr

sounds like you’re in a bit of a pickle mate I hope you do find some sleep and, I hope you do continue to wake up (I’m at risk of SUDEP in the night but, I’m determind that that’s never happening). if it helps, I find a bit of reading, especially something technical that I have to think about before bed time tends to tire my mind and help me to nod off eventually. your gp or neurology team may be able to prescribe something to help with the leg twitches at night and nerve pain during the day- maybe something that makes you drowsy

for what it’s worth, I think folk like you and me that still have the use of our legs (even if difficult now) are some of the lucky few. Some on here do have it worse than us. I’m a firm believer in that while we still can - use it or lose it. I struggle with weakness and tremors in my hands so, I use them as often as possible ( I’ll have to correct this message loads of times before I press reply but I’ll flippin’ well get there. I was diagnosed around 7 months ago with RRMS and epilepsy . before that, my life was the best it ever had been but, this thing ended my career. but s**t happens, I’m still me and, you’re still you - thank god for small mercys

you may be able to get get help with the ncontinence if you ask for it. I pee myself when I have a seizure then, wake up in hospital to find that my trousers and underwear have been removed and, I’m wearing an adult version of those huggies pull up pants - they’re actually quite discrete.

we’re at the colder end of the year now so, it may be worth trying that walk again, it doesn’t have to be far (mine aren’t because I get disoriented and lost easily now)- maybe with a stick or 2?

I also have vision issues - I find that people are generally kind enough to give me some leeway when I’m I’m walking and they spot my limits now.

I’ve found that if I find a line that I can see and follow, I still occasionally bump into someone on my left side but, it tends to stop me falling off the pavement into the road or walking into lamp posts.

keep battling on and, take the small wins as they come - they can come

I also often lose words but, I find a quick descrpition of what I mean gets me there - the latest one was, Wardrobe became, big wooden thing upstairs full of clothes

I wish you some good days.

all the best mate x

Jon.

[alison100]

Those early days post-dx are very tough. The contrast between cruising along without a care in the world and suddenly you’re up shit creek without a paddle for the duration…? Very hard to take.

Everyone’s different, but for what it’s worth my RRMS was very active at the start as well and it was just one darned thing after another. Then I started on one of the old-school DMDs, and things calmed down for a few years. After they heated up again, I was put on the much stronger DMD that I have now been on for 15 years with no relapses and no obvious progression. That won’t last forever and it might change by the time I’ve pressed send and accepted my husband’s suggestion that it’s time for a nice glass of wine, but it’s good now. It hasn’t always been good, and it won’t be good forever, but it’s good now, and that’s something I have learned the hard way to appreciate as much as possible.

I don’t know what your treatment plan is but, assuming you have RRMS like me, I assume you’re either on or will be starting a DMD. The strongest ones really can stop even very active RRMS in its tracks. So actually there is a paddle. It’s shit creek still, but there are paddles, at least at this stage of the condition.

Hang in there. Life will never be the same again, but in my experience it can get OK again, and I hope that you find the same.

[alison100]

I so agree about the colder weather. My walking range is not great, but I was out this morning and it was really cold and I was definitely doing slightly better than usual. In hot weather I can do nothing, but when it’s nice and cool, things work as well as they’re going to. Also, good call on the walking aids. I use two hiking poles for stability, two being much better than one. I still ended up on my arse this morning (no serious harm done) but overall they are so good for stability and maximising range.

[Hank_Dogs]

Hello @jmr I’m just wondering how you are now? A diagnosis of MS is a lot to deal with - there you are getting on happily with life and then suddenly, bang your life changes and the future looks scary and uncertain.

I’ve noticed from your previous posts that you have talked about low mood and depression? Many of us with MS, including myself, experience depression and anxiety and I’m just wondering if you have talked to your GP about yours? Counselling can also be very helpful .

Something I have found useful and nice to do is mindfulness/ meditation.

I very much hope and am sending you best wishes for is that after the initial shock and terror of the diagnosis, you can shape a ‘new normal’ life. It won’t be the same as the old one but as @jthatcher @alison100 are saying, life can be OK.

I think it helps when , in addition to a Disease Modifying Drug, you find ways in which you can support your body and mind in dealing with MS. In my case I’ve found the website of Overcoming MS (living well with MS) very helpful https://overcomingms.org/ .

In my case I’ve been relatively fortunate in that it’s taken years for my symptoms to get where they are now : can’t walk except with a stick or Rollator, and experience bladder urgency and constipation. Fatigue is an unwelcome visitor

[jamesdjgale]

hey @jmr - I’m so sorry to hear all this.

does your neuro/MS team know you’re struggling like this? I’d like to second what others have said here; there’s a wealth of great advise.

if it is any comfort, I was diagnosed a year ago after a relapse that sounds not dissimilar to yours and still struggle with many difficult symptoms. leg spasms stopped me sleeping and walking, extreme fatigue, brain fog.. the relapse was extreme but there has been some improvement, albeit it has taken time. 2021- 2024 were the happiest years of my life; the relapse in sept '24 put a sharp stop to that and the years since have been a struggle.

I’m glad you have posted here and would encourage you to do so: reach out to anyone and everyone you can. the MS society has a nurse helpline - [0808 800 8000](tel:0808 800 8000) - who may able to help. you may find small simple wins make an enormous difference: the alleviation of suffering or a good night’s sleep may go some way to easing your burden (reading before sleep is a great recommendation!). and I very much hope they do ease. hang in there

I would also recommend counselling and mindfulness meditation. in case of clinical depression or any other mental health issues, speaking to a doctor for medication can also be a game-changer: I know folks whose situations have been transformed by sertraline. it keeps them afloat when its needed

don’t hesitate to reach out, and wishing you the alleviation of symptoms and better days ahead