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.

I feel you ! Recently diagnosed after years of being fobbed off by my gp being told it’s just health anxiety , to going for an eye test and sent straight to hospital with severe papilledema had a ct and MRI which showed lesions on the brain , then a lumbar puncture which showed high pressure on my brain and then 5 days later a neurologist appt who combined the evidence and all my symptoms and diagnosed me with both chronic intracranial hypertension and multiple sclerosis. It’s been a crazy crazy month and I’ve not taken it all in yet but I’m patiently waiting for surgery to fit a shunt in my brain to help the CIH and having weekly lumbar punctures. After 4 years of the gp making me feel crazy it’s great to have answers but also very daunting as I don’t know much about either condition 😓

Interested in this thread — years ago DP had what I can only describe as an MS "scare": optic neuritis, with almost but not quite enough brain lesions to meet the threshold for an MS diagnosis. Somehow what got round my family was that he'd been diagnosed with MS (at the time, info online on isolated ON tended to split into "it may not develop into MS" and "ON with no other explanation and no further MS symptoms is MS but the lucky version"), so we had people coming up to him at a family funeral to commiserate on his multiple sclerosis diagnosis. Odd feeling. Anyway, with the lesions he did have, plus the fact that none of the other possible causes of ON really seemed to apply, we were both watching him like a hawk for years for anything else that might signify MS, and I guess I don't have to say here that that's an enormous list of possible symptoms, that you can get from all sorts of other causes. It's been over a decade now and nothing yet… I don't know if it's possible to have MS go to sleep for over a decade then come back.

So since then, with all the stuff I read about MS at the time, I've wondered how people live with such an unpredictable and sometimes invisible disability, that the rest of us don't really know anything about. I guess shitty thing probably covers it pretty well.

I know someone who developed aggressive MS in their early 40's, it's such a cruel and as said, shitty thing to get. Hers was very aggressive and within five years she has very little quality of life and doesn't recognise her children and grandchildren. I feel for her DD and GC, as well as her. She goes in and out of a hospice under palliative care, each time they think that she is close to the end. It's an wicked condition.

@Thatboymum
Wow what an awful month. I didnt know anything about MS when diagnosed. Takes a while for it to sink in.

I feel for you

@ClumpingBambooIsALie yes it can and does lay dormant for many many people. My first indication was 22 yrs before my second. So you do need to keep a look out for any changes.

@Ponoka7 it's the unknowing that's hardest to live with.

10 years diagnosed. Hate it. Much love to all of you also living with a condition most don’t understand.

Yes I have it but would like to know more about it, I had optic neuritis a few years ago and was sent to the eye hospital and referred to an neurologist. Once the scans etc were done they confirmed MS, to be honest I have had too many other symptoms and an just taking medication to try to keep it at bay.
I would love to hear other peoples experiences with this condition and their experience of the meds.
I’m thankful it seems relatively mild and pray every day that it stays that way 🙏🏼

I did not know that! Thanks for this thread, I'll keep a surreptitious eye.

I got diagnosed from a research study I did as a healthy volunteer. I think it's the reason I've managed to stay pretty well and still working full time.
But it still sucks.
As soon as I started having issues I was put straight into treatment, that was appropriately escalated when it didn't work.
And my neurologist wanted a Guinea pig for Lemtrada, so I had that. Some days are harder than others. And hot weather is an issue.
But I'm lucky that I can still work full time as a nurse. But having had a narrow escape from a 'catastrophic relapse' and being paralysed. I do not take that for granted.

Me! Diagnosed 23 years. Symptoms from early teens, diagnosed when I was 20.

I have a mixture of cognitive and physical issues which can make things really tough. I’m on my 5th MS drug.

Not me, but my dear mum was diagnosed about 5 years ago.

She had years and years of being fobbed off by medical professionals. When she finally had her diagnosis, the consultant went over her medical history and said the MS was responsible for almost all her health problems over the previous 10 years 😩. She has progressive MS so there isn’t really any treatment, just symptom managing.

Following this thread to hear others experiences and for any information that might help her. We are lucky in that currently her progression is slow, but I am absolutely terrified for her future. I can never tell her how I really feel. I am so angry (for her) that she is robbed of her best years with her grandchildren. She lives for them and sometimes they are her only reason for carrying on at all. After working her arse off my whole life to give us the best lives, she can’t even enjoy her retirement due to the constant pain, spasms, mobility issues, exhaustion etc.

Sorry for the rant, it’s difficult to talk about it in real life. It is such a cruel disease.

I have MS. Diagnosed in 2017, first symptom in 2016 I think.

I haven't had a relapse for a couple of years now. But I do get extremely fatigued. I just can't do as much as other people. I just want to lie down in a dark room most of the time.

I have two small kids and that makes it difficult too.

Currently waiting to go back on treatment after having a baby.

I don't have any mobility issues at all, just fatigue now. Some days are better than others. I have no idea if one day it will really kick off or if it will stay like this. It's really hard to live with not knowing what the future brings.

I have MS too. Diagnosed in 2004. Relatively well for the most part for which I am thankful. I still work full time, but manage it carefully. As others have said it's the uncertainty which is really hard. Sending hugs to all.

Not me but my poor mum was diagnosed with PPMS. I know how tough it can be

I've got MS too, diagnosed 17 years ago following symptoms such as leg numbness, l'hermitte's sign, fatigue etc. I chose not to have any medication.

I had a few relapses over the years but nothing too awful. Apparently my brain and spine are "very florid" but the only symptoms are the bone crushing tiredness and a dropped foot (which means it's now progresssive). I'm very lucky compared to others but experiences are so different.

Had it almost 40 years.

It's a pain in the... Well, everywhere! Mine is secondary progressive, described as 'relatively benign', meaning that most of the time I do reasonably ok but not well enough to hold down a job.

This summer's heat has floored me so I'm struggling right now and hoping for some improvement soon.

As others have said, it's the not knowing what's next that's the most fun.

Yep. I'm sick to fucking death of needing to nap every day, not knowing if my legs will work properly and dizziness that is debilitating. Being judged for having a blue badge, if I'm not using a stick that day. Worries about how it will play out as I'm only in my forties and trying to succeed in my career when sick days get in the way of that.

I'm usually positive but things feel hard at the moment. And no one really understands my issues despite me explaining how I'm personally affected.

Awaiting diagnosis following a spectacular “relapse” last month when a locum GP and optician out 2+2 together and sent me straight for a CT.

There have been incidents over the years and I’ve had multiple MRIs which show a metric shit ton of lesions - but the usual diagnosis is “fat”.

tbh, until I lost my sight last month I was berating myself for being fat/lazy/useless etc.

im not sleeping well right now because tbh I’m expecting the neurologist next week to say “ah yes, youre fat - that’s why you have diplopia, TN, dozens of lesions and can’t move”.

I’m so sorry everyone that this horrible illness even exists and that there are so many struggling out there.
But can I ask?….. In hindsight, what were your earliest symptoms, and how long and what did it actually take for you to be taken seriously.

Following as I'd like to know more. A member of my team has this, she has so many fears about the future. She's the most beautiful women, inside and out and only 25 years old.

I was diagnosed about 5 or 6 years ago. It was a bit out of the blue following a strange symptom. My mobility is a bit affected but I don't know how much of that was lockdown related or how much was solely due to MS. It's not lots of fun and because of treatment I'm immunosuppressed.

I have MS, it is rubbish, very difficult to live with, never dreamed I would be in this position. But I try to keep positive, some days this is easier than others! Hugs to everyone & their families in this situation.

Hi all,

I don't have a diagnosis but this is the perfect thread for me to ask question if you don't mind? Also sorry to hear you are all suffering x

I have been 'diagnosed' with fibromyalgia for almost 10 years, nothing else has been ruled out. I have a lot of symptoms of MS but they refuse to test me. Can someone please give me their early symptoms and how it affects you day to day?

I have chronic fatigue, pain all over, I get dizziness that comes and goes, I've had the blurred/lack of vision in my eyes but gp said panic attack, swallowing difficulties(not every day but some days and has come on in last 18 months), I have an over active bladder, spasms in my feet, hand tremors a lot, numbness in pelvis and legs on occasion that can last for days. Is anyone having any of this? Perhaps it is fibromyalgia? Gp says fibro and health anxiety

Dsil has MS, diagnosed in her early 30s. She does really well, says she's lucky to have a really supportive MS nurse who listens to what's most important to her and helps her find ways to keep doing those things.
But all in all it sounds thoroughly shit and I'm sorry so many people are having to deal with it. We live in the north of Scotland and I know there are potential links to lack of sunshine and vitamin D. Dsil gives us a massive tub of vitamin d supplements towards the end of September every year and makes our teenagers promise to take them. No idea if it's effective but if it makes her feel better we'll all take them.
Fatigue and foot drop are her worst symptoms. I've had chronic fatigue since having covid last year so I can sort of understand that one. But just randomly finding yourself unable to control your feet must be horrible.