Last reply 1 month ago
Newly diagnosed

First post here. Around March/April I started experiencing the first symptoms of numb/tingly legs upon waking up, this gradually subsided followed by other random numbness in legs/sides/fingers. Multiple trips to doctors from May onwards. I was dealing fine with the possibility of multiple sclerosis until around August when my left arm started to feel weak and my fingers/hand was very tingly. Gradually it got worse and I haven’t been able to drive or do my job (or my life’s biggest hobby) since then. Finally had my neuro appointment end of September, and 2 weeks later confirmed diagnosis. I had 3 days of iv methylprednisolone and will be checked up on again in 6 weeks to discuss DMTs then an MRA in a few months. I’m told it can take weeks for the steroids to have an affect and I’m scared to death I’m never going to get any decent use from my left hand again. Anywho that’s my story, I haven’t included little detail however haha

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vixen
1 month ago

Hello @drummondbass, welcome to Shift. Great name! You’ve had loads to get your head around, we all know what a shock this process is. The most important thing for now is to focus on recovery but making sure you don’t push yourself too hard in the process. It can be tempting at first to try to prove you can still do things, but your body is in a weakened state and needs to heal. Did someone tell you that you need to advise the DVLA if you have a diagnosis? It just means we need to renew our licenses every three years. There are lots of newly diagnosed on this site so you’re in good company. You could start looking into DMTs in the meantime, but always look at authentic sites such as MS Society. Googling and random searches are always a bad idea, as you need solid and accurate information, not scare mongering. Hopefully your hand will recover, but it might take a longer time than expected. Stay tough, make sure you eat healthily and post any questions on here, we’ve all done it! All the best, focus on being kind to yourself and recovering well x


drummondbass
1 month ago

Thanks for the response 🙂 yeah trying to keep my expectations tempered for the moment. I am aware about the DVLA thanks for the heads up though. I have looked at DMTs through official sources but I honestly don’t know, unfortunately I also have mild haemophilia a so I am unable to take muscular infections, guess that limits me. Hopefully next couple of weeks I see improvement, walking is a little better so good sign I assume. Thanks again 🙂


stumbler
1 month ago

Hi @drummondbass and welcome.

The Steroids work in two ways for you. Primarily, they will dampen down the inflammation on your Central Nervous System (CNS). Then they will be working with your body over the next 6-8 weeks to recover any lost function. But, you do need to rest up to allow this recovery to happen.

The following tool may be of some benefit in your consideration of the available DMTs :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


drummondbass
1 month ago

Thanks for response. In terms of rest is there anything I should be avoiding? I have been trying to take a small 15/20 min walk each day as I have read lots about exercise being important but other than that I know nothing aha.


stumbler
1 month ago

@drummondbass , as far as exercise is concerned, it is little and often. Apart from moderation, be guided by your body. It’ll let you know how you’re doing. Just listen to it! 😉


drummondbass
1 month ago

Thanks very much for the advice 🙂 it’s greatly appreciated and I sincerely hope you’re both doing okay!


grandma
1 month ago

Ditto to everything that’s been said already by Vixen & Stumbler but try going for a swim. Apparently 1/2 an hr in the baths is the equivalent of a 1/2 marathon! If you can’t swim it doesn’t matter, just walking in the water, if you are confident float on you back and ‘scull’ in the water. Fabulous exercise for everything down to fingers and toes. If all you can do is hold onto the side, even just doing that and raising your legs up and down helps. There are things I can do in the water that I can no longer do on land, if you swim right from the start you might help getting stiff and having unresponsive legs in the future. By the way welcome to the sit😍


doubleo7hud
1 month ago

Ey up,

Congratulations on being a proper MSdebator, once those steroids kick in your gonna feel like fecking superman 😂 so get thee sen aht and abaht and avvv ittttt ahhh but at the same time take it easy matey and rest up as much as possible so your body can heal itself. Keep thee chin up cocker were not in our nesting tins yet, laugh as much as possible and you’ll be reet as a bobbin.

Keep on avin it large

Dubsy


drummondbass
1 month ago

@doubleo7hud thanks mate much appreciated the positive thoughts and a wishes! Doing my level best to stay positive, waiting for these steroids to do their stuff 🙂 hope everything is all good with you! Thanks again


doubleo7hud
1 month ago

All good this end matey avin it as large as i can with a set of floppy dildos fer legs, juggling work, three kids and a missis he he (not so mich avin it now im a old fart disguised as a young ish fart). But yeah…. lol im reet matey thankin you.


vixen
1 month ago

@doubleo7hud, hope @drummondbass appreciates that rather blinding track you posted, it’s very upifting indeed. Or reet gradeley, as you up north might prefer.


drummondbass
1 month ago

@vixen I did, made me think of some early pendulum


vixen
1 month ago

Tarrrraaannnntullaaaaaaaa! I am quite old really, but well into my music. Been to 2 gigs in the last week ( hard work, mind). Four Tet and Kruder and Dorfmeister. Wicked. Music makes the world go round, MS can bog off!


vixen
1 month ago

doubleo7hud
1 month ago

@vixen was thinking more along the lines of MS can fecking kiss me hairy Yorkshire arse 😂

Another one from a pal of mine who lives int yonder hellfire (London) it’s a banger


cameron
1 month ago

The only thing I can add is that while you’re waiting for the steroids to kick in and your next neuro appointment is that it can help to keep a symptoms diary. It doesn’t need to be long, just a brief daily record. Two reasons for doing this: a) it will be helpful to take it to your appointment and b) it gives you a focus – think about and concentrate on your MS for five minutes, then forget about it for the rest of the day.


arbee
1 month ago

Hey @drummondbass, I get similar symptoms and have tingling in my arms and legs (hands and feet especially). I had a very similar relapse to what you are describing and also went on a course of steroids, it took a few days for them to properly kick in and then the tingling did calm down a lot although it’s never completely disappeared, I’ve just got used to it but it did get gradually better over the following months after steroids.

And whilst we’re on the subject, I was obsessed with dnb in the nineties and noughties, ran a club night for 15 years and used to dj up and down the country every weekend, good times but then old age (and in hindsight, ms symptoms) started kicking in and I slowed down a bit, much prefer stuff like @vixen these days (Four Tet is my favourite!) but they do still wheel me out to play old skool dnb at my mates festival every year.


lightning87
1 month ago

Hi and welcome 🙂
I am one of those newly diagnosed, was diagnosed in June this year. Started Tecfidera a few weeks ago and all going well so far.
From my personal experience, my numbness hasn’t gone in my hand completely but is better. Unfortunately damage can take time to heal but hopefully you should make a somewhat near recovery or if not complete recovery soon.
This is a great site and use it as often as you need. Someone will always be here to offer support and guidance.
X


drummondbass
1 month ago

@lightning87 Hey! Thanks 🙂 encouraging to know someone else has a similar experience. In terms of feeling im really not too fussed about my left hand (it’s difficult to describe because I still have full feeling so not quite numbness) and how it feels, I just want so badly to be able to use my gaming controllers/keyboard again as gaming is my hobby and haven’t been able to play since first week of August 🙁 being able to drive again would also be nice and go back to work. Still only been 4 days since I completed my steroid treatment so fingers crossed (just about lol) my ability to do those things will return over the next few weeks. Thanks for the welcome 🙂 everyone’s been so great x


lightning87
1 month ago

I know the exact feeling you mean as this is the feeling I have. Not numb as I can feel it but not tingly either as it’s not tingling! You should start to recover soon, it can take weeks even months but you will get there…and back to gaming 😉

The only way is up!!


doubleo7hud
1 month ago

@drummondbass keep trying to play yer games matey will be good physio for your hand. Don’t get frustrated with it tho be patient you’ll get there again…. use it or loose it matey. I’m back driving again thought I’d never be able to do it again and I’m a hero on fifa 😂


strictlysoca
1 month ago

@drummondbass keep working the body as much as you can and try to get some physio. Rest if you need to but don’t quit. Try not to make a lot of life changing decisions right now. The best advice from the neuro who diagnosed me was don’t stop work but do take time off sick (I was dragging myself around with a relapse). I’m still working 6 years on..

@doubleohud shine on you crazy diamond.


drummondbass
1 month ago

@doubleo7hud tried playing some of F1 2018 yesterday and it went better than I expected! Obviously not as good as before but I could play. Hope you don’t mind me asking but what symptoms did you need to overcome to get behind the wheel again?


watsoncraig
1 month ago

When I was first diagnosed (3 years ago, not 30) I was disheartened by the amount of folk saying they would “pray for me”, mostly in FB groups then I found here and was surprised by the knowledge and attitude out there.

I am not a God botherer
If there were a Supreme Being, this would not exist
‘Fraid praying for me would be a lost cause or it would have changed my taste for Gin to a tase for water 😉


doubleo7hud
1 month ago

Don’t mind at all matey I had/have Foot drop, floppy dildo legs, broken eye, rubber arms 😂 the full shebang was on two sticks for a while should of been in the wheels but I fought with it and I’m plodding on like a trooper, fighting the b*stard and trying to get me self back to my new normal. Just need to take it easy and try pace yourself mate (should take my own advice 😝 like a bull in a fecking episode of antiques royd show).


lightning87
1 month ago

@doubleo7hud you crack me up 😂


drummondbass
1 month ago

@doubleo7hud wow that’s a lot to overcome, you must be very proud of u yourself and it gives me lots of hope thanks!

@lightning87 lol me too!!


doubleo7hud
1 month ago

@drummondbass I just crack on matey not too fussed 😂 but happy to help a MSdebator in need.

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