MS stuff

[TheClaws]

Great to see this new area set up ... in this thread, could we talk about our MS issues? Anything to do with symptoms, treatments, medications, alternative therapies, questions, chat - even a general let off steam is fine

Saw another neurologist yesterday, she said all my symptoms point to ms. My scan showed a leision on the brain, and something to do with a disk in my neck. Got to have another MRI on the spine and a lumbar puncture. So no further into knowing what's going on. It's very frustrating.

Each to their own. If you want to risk Plegridy, then that's down to you. As someone who is heading to secondary progressive because the damage done on when my only options at diagnosis were the CRAB drugs. I hope you will do well on it. And that's not being sarcastic, I really do hope you do well. As MS is so variable, the advice is to be hard hitting from the start, but your body, your choice.

Hello everyone How is the heat at the moment affecting your M.S. ?
I will be 15 years diagnosed in July.
Biggest symptom is the dreaded Fatigue.
I try and put on that I am o.k. if anyone asks.
It is so hard to sleep in it

I slept with a wet flannel on my chest! Everything just feels that bit more sensitive.

Yes I agree, absolutely dreadful fatigue today, legs feel like lead. I do like to see the sun, but this is too hot for me. I know exactly what you mean people always say how “well” I look! They don’t know the half of it, what’s the point in moaning, when you can’t change it. I try to keep positive and mindful and for me it helps.

How are all the Ms-ers coping in this heat?I'm wiped out!!

Yes I agree, wiped out to, it’s just so humid, and no sign of the weather breaking on the south coast.

I started limping again last night. First time in 18 months. Currently off sick from work tonight trying to rest up.

Back on crutches for the first time in 18 months and still off sick. The clean utility at work was 29.6 degrees yesterday. So glad I'm not there.

I live in Australia - the heat in summer here is awful for me. I’m feeling for you all in the UK and other Northern Hemisphere regions in the heat

Thanks @TheClaws - any tips from Australia. I am currently spending most waking (and sleeping !) hours with a cold wet flannel on my head.

@bellinisurge - keep well hydrated with just water and sit in front of a fan with loose clothes. If you can get to a pool I’d recommend a cool swim. Also, keep your outside activities to the cooler parts of the day where you can, and don’t spend too long outside at any one time. You do still need sun so don’t avoid it, just do it sensibly.

Cheers @TheClaws . I'm menopausal too so it's double the fun.

Desperate to go back to work on Friday but think I'll not mange a 13 hour shift. My ward is boiling. Feeling very isolated, board and fed up .

Hi there, can I join please. I've spent most of my time since being diagnosed hiding from the fact I have ms. So much so that my family and friends don't really have a clue how much it affects me. Would like to be able to talk to people who kind of get it. People who understand how crap
This heatwave has really been, people who might get what I mean when I say I'm kinda numb but not really when describing symptoms. Would just be nice to be understood and be able to have people understand why I get a bit grumpy when my dh moans he's a bit tired and to know what it's like to feel engulfed by physical tiredness. I could write a proper essay here but yeh, hi! I've got MS, nobody gets it and it sucks sometimes.

Sure myfridge. Vent away! MS sucks sometimes. And as some of its symptoms, like tiredness, can be invisible to others, that makes it ever harder to put up with. We do understand you, and welcome.

Hello, im reviving this thread as ive just finished round one of lemtrada (well it was last week) and wondering how people recovered from it.

For context, i had been on tecfidera which was working but lympocytes were too low. Previously of plegridy - platelets too low

So i pushed for lemtrada rather than aubagio.

Infusion went well but i feel like my head is prepared to get up and get moving but my body is a bit behind the times. I do t know how much of that is: a) just purely from being in hospital and subsequently taking it easy for a few more days, b) eating habits gone wonky - too much sugar, or c) podt steriod crash.

I was well before infusion started so from what i can gather that can make a huge difference. Its only tues but i only have this week off and then back to work

Hoping someone tells me it gets better. Trying to eat better and keep on drinking lots of water but i have no get up n go, which is starting to peeve me a wee bit

Any insight would be great!

I’m at a very early stage here. I have ME along with Crohns, Coeliac and lots of MH issues. Since January I have been experiencing numbness in left leg and arm. Dr has done blood test but not sure what he is looking for. I have an issue with my right optic nerve. Been sent to eye hospital who said she thought it was ok. Now with these other semi am going to go back to dr. What should I ask for him to refer me to?
Any other insight welcome please as I am quite worried. Thanks

That should read ‘other symptoms’.

@comeagainforbigfudge I had leotards 3 years ago. It took me a few weeks to get over it as I was very wiped out. But I've barely looked back. Didn't do well in the heat last summer but have been very well and disease is inactive. The monthly bloods are doing my head in a bit though!

Hi all, I am so pleased to have found this thread. I had an MRI last week following 6 weeks of really debilitating nystagmus and double vision. The results show inflammation on the brain and the neurologist says all signs point to MS. I am going in to the day unit for a lumbar puncture and blood tests.

I don’t know a great deal about MS and am purposefully keeping it that way until I get a firm diagnosis. I guess I am just here for a hand-hold while I’m in this limbo period. My husband and Mum are being amazing but I know they are scared too. I also have a 3 year old who is blissfully unaware that anything is going on apart from “Mummy can’t drive because she has dizzy eyes”.

Huge respect to all the amazing posters on here

Well done for finding us. I was diagnosed when my little girl started preschool nursery. She's nearly 12 now.
Keep in touch when that suits you.

Hi Squaffle and all fellow MSers. Hope everyone is coping OK. Sometimes it does seem like that’s all we can do, doesn’t it? For me, I give thanks every day we have such amazing medications available to us - imagine how different it would have been twenty, thirty, forty years ago with the same disease. We have options now 🎉

Do symptoms get worse when u r exhausted?

Apparentlyl Lemtrada is being put on hold for new patients due to issues with side effects. I hope they sort it out. It's worked wonders for me.