I h****ave been a member of this site and forum before but I have only recently come back on (as I had forgotten my password). Many things have changed on here and it has taken me a while to get used to the site all over again but I am back! Anyway - a big hello to all the newbies who have recently been diagnosed and to all the users who gave me excellent support during my first years of being diagnosed
I was diagnosed 6.5 years ago (that’s scary!) while having symptoms for over 8 years, and I have now got used to having MS. I know when I get new symptoms I should rest and listen to my body on a daily basis - but do I always do this? No. Why? Because I am determined to live a ‘normal’ life as they say! I do rest whenever needed though - and I always bump into the very ignorant people - nothing ever changes. The only thing that does is your attitude towards them. Either you find a way to handle them… Or you get rid of. They clearly aren’t very important toyou.
I have recently turned 27 and i’m from the Midlands. Where are you from and when were you diagnosed? (Sorry if this has been posted in the wrong forum! Technology goes beyond me sometimes lol)
I’m fairly new on here and am also from the Midlands. I first experienced symptoms 30 years ago but only had my diagnosis of RRMS in 2010. Recently had a relapse but am hopefully going into remission now and finding ways to make adjustments to daily life in the rat race. Like you and many other people on here, I want to live as normally as possible.
Polar Bear: What do you paint? Nice hobby or do you do it for a living?
I’m in County Durham but originally from Norn Iron (that Northern ireland to any English ones). I had my first symptoms at 27 - pins and needles for two weeks. Three years later more pins and needles and poof (special effects on this site are rubbish) 4 months later, I’m told I have MS. But I am one of the lucky ones. Diagnosed very quickly with very little fuss, I went to see a consultant recently who told me that I am in the fortunate 5% of sufferers. I think he was gobsmacked at just how little it has affected me. I’m not on medication and I can still go to the gym. My trip to the consultant was the first time I’d been to see a doctor about my MS in 12 years. Balance is still shot to h**l and walking down steps takes a age, walking down hill is done with baby steps (running out of the question) but all in all I am very lucky indeed.
I must say - duvet days do sound good when you feel absolutely rubbish - especially in this weather! A good way to make all the ‘normal’ people feel jealous!
Polar bear: Did it take long for you to be diagnosed or did your symptoms come and go all those years? Also, do you paint as a hobby or a living?
Stitch: Did your symptoms play hide and seek with you all those years or did you have rubbish doctors? We all need to live as good as we can. I hope you are feeling better
JellyBabyKelly: It’s good to hear off people who have had MS for such a long time and are doing well - good on you! I was one of the lucky ones of being diagnosed within a month of my more severe symptoms. I was a ‘medical mystery’ while in hospital where my parents did not let them discharge me until they had clear answers to what was wrong with me. I couldn’t be more grateful
I was diagnosed august this year. I don’t know what type of ms I have yet, going to see an ms specialist in York next Monday so hoping he will be able to tell me. I’m starting to feel a little anxious about the appointment now but keeping a lid on it so far lol
I left my career in nursing in 2006 due to Psoriatic arthritis.
I live in East yorkshire by the sea
You were diagnosed very young, that must have been quite tough for you and your family. I’m glad that you’ve found a way to cope with it.
Hello Polar Bear and Noreen, It’s nice to hear from you both I myself like yourself polar bear had sensory symptoms… One day i couldn’t feel my left thumb and the following day I lost all my feeling in the left side which resulted in a lack of coordination. My doctors referred me to thr hospital with a doctor telling me I may be having heart problems, a brain cancer or tumour or a stroke… Thanks - thanks a lot. Lol. They really do know how to scare you Noreen - what kind of symptoms did you have? Good luck for Monday - at least you know what MS is. After my neuro spent half an hour telling me about the history or MS and clearly I was not concentrating - I decided yo ask - so how long will it take for me to get better as well as will paracetamol hellp? Luckily he was really nice so he did try to get me on board again but gave up when he could tell I wasn’t concentrating - oops lol. Fingers crossed for you. How do you manage to deal with arthritis as well as MS? Good luck with Copaxone. Are you using the inject pen? I’ve been on Copaxone since 2008 but have been told to reconsider my decision due to on going new symptoms. I don’t know what to do though. Just make sure you always change your sites. The worst for me is at the back of my arm - tried it once… Never again. Are any of you on Facebook? Xx
Noreen - what kind of symptoms did you have? Good luck for Monday - at least you know what MS is. After my neuro spent half an hour telling me about the history or MS and clearly I was not concentrating - I decided yo ask - so how long will it take for me to get better as well as will paracetamol hellp? Luckily he was really nice so he did try to get me on board again but gave up when he could tell I wasn’t concentrating - oops lol. Fingers crossed for you. How do you manage to deal with arthritis as well as MS? Are any of you on Facebook?
Hello seashell. You ask about my symptoms…they are from top to bottom lol
Headaches,migraine, confusion, problems with short term memory, numbness round mouth area.
Double vision, dry sore eyes.
Pain in neck, spine and quite a few of my joints.
Buzzing in legs, feet and hands…feel like electric shocks, twitching/jerking movements to legs.
balance problems, especially when out doors, dizziness
urine/faecal incontinence
Bet you wished you’d never asked lol…this is good practice for me for monday lol
Hi seashell. I was dx march this year after several months of optic neuritis that was progressively getting worse. Can pinpoint symptoms back to my teens. Have got a fab neurologist and ms nurse.I live in east sussex im on facebook. Take care Kate
You really do go through a lot on a day to day basis. It will definitely be worth seeing your neurologist on the Monday so you could possibly look at some treatment options. My day to day… Hmmmm. Normally I stay quite well (touch wood) but lately my sisters and cousins wedding has finished which in total took upto 2 months to finally end. This ended with me getting the following which I am suffering from now after an ear infection and a flu… Extreme fatigue A weak bladder A numb, dead and weak arm Stinging sensation in my right eye (continuous) A kind of body lock sensation on my left side every time I get up after sitting down/lying down too much lasting a few seconds which feels like a life time Otherwise, fatigue is my main issue and a few new places of numbness every so often. It’s always the left side with me. 6 years ago and even now lol I could never inject without the pen… Not on day one - not now. Eeeek! But it’s a good thing you can. The injector can bruise you some days It’s so good that you have a good nurse and neuro Kate. One of the lucky ones. My nurse is leaving in January so it will be someone new from then on. I don’t know if that is a good or a bad thing. Eek! Ladies… You can search for me… Sudaf Rafi. I think I am the only one on there - hopefully anyway lol Xxx
Seriously though fatigue is horrible…I know how you feel. I probably didn’t mention it because its become the norm for me now.
I sense a maturity about you coming through in your writing, having a condition like MS to deal with kind of makes you feel older than your years if you know what I mean?
I hope you enjoy being back on the forum.
I’ll try and find you on facebook over the weekend seashell and send you an invite. If I do I will be using my first name Noreen.
I don’t talk about my MS on facebook, there are people on my side of the family who don’t know about my diagnosis.
I totally agree - fatigue is such a norm and i’m far too used to it. However I do push myself til the end just to be ‘normal’ - however bad that sounds! You are probably the first person to sense the maturity so I must thank you for that - lol. Everyone thinks i’m mad really… But no. I was diagnosed mid uni so I had to put lots of things into place. I did a gap year and then went on to do my final which i’m so glad about otherwise I would not have done as well as I did - even though I say so myself lol. While my friends wete chilling and worrying about the little minor things in life… I had to worry what tomorrow would bring me and if I would be able to even continue and finish off what my parents always wanted me to achieve so in a way… I had to grow up quicker and think ten steps ahead I don’t openly talk about my MS either on there - especially not all the time. It’s awesome being back on the group talking openly about my MS as well as getting to know more people with it look forward to seeing you on facebook xx
I didnt list my symptoms bu the worst one is the fatigue by far followed up at the moment by very stiff feeling legs which is horrid. Bladder and bowel issues Twitches Weakness Sensory troubles Numbness in different places… On lots of different pills to try and ease them all aswell as rebif. There wasn’t an ms nurse around until recently but boy im glad shes here now. You were dx young!!! Im 34. Congrats on doing your final! I was in the middle of doing my nvq3 in childcare but have put it on hold for now, hoping I can go back to it soon. Take care Kate x x x
Hello Kate. It always makes me sad when I read about young people having ms or any other incurable condition. It’s because I’m a mother…pulls at my maternal emotions. Hope you achieve your dreams. Noreen xxx
It tugs at my heart strings to got a 5 year old and a 12 year old. i really feel for those that get it at a very young age!! Poor mums and dads.
Im not sure i will now work in childcare,it’s too exhausting but i have to complete this course!!! It’s the 2nd time of doing it (i gave it up several years ago after my dad passed away)
Thanks Jennifer
The fatigue was there when i was in my teens/twenties but put it down to burning the candle at both ends!!!
I’m adopted so no idea if there is anyone in my biological family with it.
Hi seashell, I was diagnosed with RRMS in 2004, last month was tole I have progressed to SPMS, I actually live in Belgium now, but have lived in Iceland, Okinawa, Japan and other places in the U.S. I am from Ohio in the U.S. But have not lived there for almost twenty years. I have started the downward spiral I guess you can say into the MS thing. Started using a stick on a regular basis, started spending my lunch hours at work taking in a nap due to extreme fatigue. Thinking about what we call in the states, medically retire, just waiting on a few more pieces of the puzzle to come together before that happens. My twin boys will graduate high school next year and then they will be off to college. Sorry, I think that more information than what you asked for, anyway, wrk come back to you! Greg
I was diagnosed 3 years ago but have had symptoms since 2006. I pretty much knew what I had prior to diagnosis as I had been a nurse for a number of years. I chose not to get diagnosed until I had a pretty bad relapse and thought I had better start looking at DMDs.
I have had ON on a number of occasions, lots of sensory symptoms including numbness, pins and needles etc. I also have some weakness in my limbs which affects my balance. I have quite severe bladder problems and fatigue++++ Apart from that I am pretty lucky I guess.
.I still work part time, so don’t get on here as often as I would like, but welcome back!
I hope you do finish the nvq3 Kate… It is such an achievement to finish any sort of education that you have while having MS. My worst was having memory problems… Exams were the hardest but I did manage to pull through with a 2.1. My parents were proud and that’s what I wanted. They do tell me to try going into education again as it keeps you busy and your mind going - but - no chance. Lol
We are all young - age is just a number. I know I act like a child sometimes and that’s the fun part lol
Wilcoxg - Are you still working? You’re doing really well to still be at work. I can’t do naps - when I sleep, I actually sleep and don’t want to wake up lol. It’s awful. Twin boys hey? That’s really good - well done to them - Where do you work?
Boo11 - I have similiar symptoms to you, majority of mine being sensory and weaker limbs. Lately I feel my left leg has become a lot more weak and as my nurse said, I have more brisk movements on my left side which means my brain is not sending messages as quick as my right side. Great!
At least you work part time - what do you do don’t mind me asking?
I went for an eye test after another two years - and I have perfect eye sight. The lady showed me the picture of my ON from last time and this time and they are both the same - woohoo. That’s one thing that hasn’t changed luckily
look forward to seeing you on facebook xx