hi my name is sue
im 38 years of age and recently been diagnosed with ms.
i feel like a little part of me has been snatched away, im trying really hard to smile my way throu it but the last 12 months have been like a rollercoster.
the thing that has affected me the most has been the fatigue all the other irratating bits and pieces i feel like my body has adapted to , like the loss of sightin my right eye, to numbness completely down my one side but the tireness is slowly driving me mad
Hi Sue, my name is Mark and i was diagnosed xmas eve 2009,my ms is now developed into rrms.
Life is like a rollercoaster with the ms monster on your shoulder.
I can understand exactly how you are feeling and it is very much like something has been snatched away, smiling is good and each day can be another challenge but just face up to the monster.
The fatigue is a problem most of us have to put up with but believe me that the fatigue is something that you will be able to cope with as time goes by, do you find it annoying that people think that it is just a case of us being tired ? (if only)
Sorry to hear about your eye and the numbness but you seem to have coped with that well
It can a bit lonely sometimes as you just wonder why is it me that ms monster has picked but we are all here to offer you support and advice if we can, just remember you are not alone.
Well best get on as the wife wants a cup of tea now,
Take care, Mark xx
no rest for the wicked
been told my eyesight should of returned by now so dont know why it hasnt tbh.
yes makes me wanna laugh out loud when people say they’re tired too lol
and yes having ms is sometimes a very lonely place, looking back now alot of things have pointed to ms for at least 8yrs,luckily i started seeing a new doctor and he picked up on it straight away, this all started a year ago.
things have moved slowly and im still waiting for medication
one thing i have is a good family around me that keep me sane .
thanks for replying mark x
Hi Sue,
I think one of the things that helps me cope is knowing that MS just happens to you, it is not a result of anything you did, it is just random, so you don’t have to beat yourself up about it.
Fatigue is not the biggest problem for me and at the moment I seem to be able to manage it. i run out of energy about 2:30 in the afternoon, but luckily I can take it a bit easier until the working day is over. It does mean that I have to recover over the weekends rather then doing fun things.
I am sorry to hear that you are still having problem with your eyesight, though i don’t think it will come back according to a timetable, though from what I have read, it is a reasonable expectation for it to recover.
Did they say what medication they were considering, if any?
Paul
hi paul
i lost my eyesight in may it has come bk a little but def not fully , i only have hazy peripheral vision 
how long as it been since you were diagnosed? was it a long process . it seems mine as taken longer as the hosp i was origionally under lost its ms specialist so i have now been transferred to the QE. since this episode started it has been 12 months i have been numb from my head down on the right side (not good).
i saw the consultant at the QE 2 weeks ago and he wants another scan done to compare to my old one. he did mention something about i may have to go into the day unit once a month to have it administered but i think that depends on the scan .
i think if i could get the tiredness under control id feel 100% better just really drags me down , but i have been told once i start medication i’ll feel better anyway hope this is right ? proper sucks doesnt it tbh lol
hope to hear from you soon
sue
Hi Sue,
good morning, once the docs have sorted out your meds you should start to feel better.
I have problems with my eyes (optic neuritis) i have not lost sight but my sight is deteriating but it is up and down, hope your eye sorts itself out soon.
I will be ready for a sleep by mid afternoon and you are right it does drag you down a bit but keep smilling as hard as that is and don’t let it make you to sad. To put a smile on your face, i had a stroke 2 years ago ’ i hope you are not smiling about that’ after that when i get my fatigue i not only feel very tired i also start to dribble.
Anyway i hope that made you smile, take care and most importantly keep smiling
Mark xx
hi mark
lol "nice " dribble aswell
so did you have to give up work? ive been a stay at home mom and housewife but just before my symptoms decided to show up id started looking for a job, thought id regain a little bit of my life back .i dont see how people find a job when you feel so bad and how you would find someone to employ you .
think im still at the point where the jigsaw puzzle isnt quite fitting together yet.
so how old are you if you dont mind me asking and at what stage where you at when u was diagnosed ?
tell me to shut up if im asking too many questions
Hi Sue and welcome to the board.
It is a complete bug*er being dx with MS and you are in the right place here. We all understand what you’re going through.
Have they told you it’s definitely Primary Progressive?
I’m 59 and was dx nearly 5 years ago. I had been dx with ME for a couple of years before that… but looking back I’d had symptoms for at least 10 years, but they would come and go and I sort of ignored them. Kept wondering why I was so tired all the time!!! Yes the fatigue is one of the hardest to adjust to… but in time it does get easier.
I gave up work because of fatigue and now live a very different life. Once I got over the rollercoaster that happens at first, I got sort of used to it. I suppose what happens is you get to know your own MS… what you can do and what will be too much for you. When to rest etc etc.
Important to remember that MS is very different for each and every person… so never look at someone else’s symptoms and assume it will happen to you.
We are a great little gang on this board and you can come on here and ask about anything… or rant… or cry… or have a good laugh… which believe it or not you can do about your own symptoms after a while.
Take care hon and looking forward to getting to know you,
Pat x
hello pat
ive not been told its primary progressive think i may have commented on the wrong bit to start with.
tbh ive not been told a fat lot the cogs are turning very slowly .except its ms .
i was referred to a diff consultant at a diff hospital, all he actually mentioned was that i may have to have meds at the hospital on a day unit.
please forgive me if ive written on the wrong wall post .
im now awaiting a new scan which will be happening on the 10th dec so the consultant can compare my old one with the new one .
sue x
Good afternoon Sue
this is the ppms bit of the forum but it does’t matter, what matter is getting you sorted out and somewhere you can speak freely about what you feel.
I have had the symtoms of ms hand in hand with optic neuritis for 25 years now ( i am 50 now), i was diagnosed officially in 2009 and more or less went in to the ppms bracket.
I have had a fair range of drugs but at last some normality has returned to my life as the drugs seem to be working, the lateset one which has been added to my list is rotigotine (drug used for parkinsons) it seems to have calmed everything down but for how long who knows.
I am still working full time as a design engineer at Jag Land Rover (i am a contractor), don’t know how long i can go on now as it is becoming a strain, as concentration is not good, the fatigue also takes it toll.
Anyway must get on
Take care
Mark xx
Sue, doesn’t matter at all. You are very welcome on here.
Hoping they get your med’s sorted out soon. Everything about MS takes ages… they know more about the galaxy than they know about this damned condition. One thing MS does teach you… patience!
Post on Everyday Living as well. Loads of support and mates on there too.
Take care hon,
Pat x
Hi Sue,
Sorry to hear about the fatigue, I had a similar problem until I found the local ms therapy centre on the internet.
They have premises nationwide and all have oxygen chambers in which I spend 2hrs a week, I find it really helps to combat fatigue.
Regards Peter S
hi pete
thankyou for replying, i will take a look into that…currently been given tablets to help me try to combat it .
thanks
sue 