Hi All,
Thank you for letting me join the forum.
Very quickly about me.....
I am Male, 44
Diagnosed with RRMS in 2009
Married with 2 kids
History of numbness and neuropathic pain - tried many things but nothing ever dents it
Getting a little worried about my future!!!
And so this is where my story begins. I am lucky, with the exception of constant pain for the last 12 years in my hands, a limited amount of balance issues and some reproductive problems, I feel like I have gotten off with my condition so far. I take Gilenya daily following a drug trial and things seem stable.
I am employed, I work full time in an active role, I am the only person working for the company that employs me based in the UK. I run up and down the UK, drive lots of miles, run around building sites, up ladders, into lofts and its a very physically demanding role. I havce never told my employer I have MS.
But....I have noticed a decline recently, not one that can be understood by many unless you have this condition but I am finding the physical side more and more demanding. I am feeling that my symptoms are getting worse and it will get to a point where I will feel I am putting myself and others in danger if I carry on.
My job is all I know and I am getting to the point where I need to consider whether I can do it or not. I am also considering registering myself as being disabled.
So I need to make a plan in life. What happens next? I know that unless I do the job I do with my current employer, there is no other job for me. I am their man in the UK and there is no desk job equivelent. All I know is the travelling and managing that I do. Also, I earn a good wage, very good, and if there are to be changes in my life then I dont want to scarifice my earning potential to do it. I have all those great things that a guy at my age has...mortgage etc.
I have done nothing so far, other than join this forum and tap into the experience of others whoi may have some sage advice or guidance from me.
I hope there is some help out there and I am also looking forward to helping others if I can!!!
Thanks in advance.
Mike
Okay, so I haven't been diagnosed yet. I have a mass on my forth ventricle that was described as a lesion, and I've just been referred back to neurology for more tests as, after ruling out other things, my GP (who is very interested in neurology herself) thinks I could have MS.
What ever it is, I'm definitely having some sort of attack. I've always hurt and had symptoms but since Saturday it's been unbearable. It was really warm on Saturday and I was in the sun a lot. I know the heat affects me.
So, aside from the usual pain and such, it's the exhaustion that's getting me. I haven't done anything yet I just feel no energy.
So, I run two businesses. I'm a private tutor (which is great because I work in the evenings). And I own a company that makes resources for maths teachers. I'm trying to make new stuff and I've sat here for a few hours trying to force myself. I've done maybe 1/8th of the work I can normally do when focussed. And I've done nothing since Saturday. So I'm very behind on the work I wanted to get done.
Please tell me this is temporary.
And, if this is MS, well, am I doing more harm?
Basically I am someone who keeps going. I've been known to be in tears from pain but still working, crying while I carry on writing because I want to finish what I'm doing. Even though I make slow progress, and stare at the screen for half an hour doing nothing, I'll still try to keep persevering.
Is that the wrong thing to do? I've noticed a lot of the symptoms come on after a busy month or so. But I can't afford to keep taking whole days or even weeks doing nothing. But I also need to pace myself, and I don't want to find out that my pushing through might actually be making things worse.
Just wondered how others cope, and whether you still work?
The fatigue does it/can it get so bad u are unable to continue working? Also what is night cramps in the legs a sign of?? again just trying to learn some stuff, Yea it can be read about but been warned the stuff on the web
Hey all I hope u r all well? My name is sally and I have had rrms for 12 years. I was recently sacked from a new job as I made a few mistakes within my 3month trial (as I feel anyone would in such a fast paced job!) I had to admit to having ms a few weeks into my trial as my `weird quirks were being noticed as well as my conative problems `same thing really but hard to explain to someone that does not understand !!!`. B4 I told people about my ms I was constantly told, even by the MD `please do not worry about making mistakes, we all make them....it is because its such a fast paced job and there is sooooo much to learn...and so many ifs buts and maybes. But, everything changed after I told them I had ms........, I made a mistake that was just stupid and as far as I'm concerned was easily made, and one of the other girls in my team made one very similar a day or so after me but I was hauled over the coals and then sacked and she didn't even get a bollocking! I was called into meeting after meeting! . I and my then boss admitted that I had been unlucky as this customer had on going problems with the co. I worked for and what I did was the straw that broke the camels back!!! I have been left feeling stupid and incapable of working in an office, I really am at my best if I can sleep of an afternoon, I no longer trust myself to do something that would involve cash and giving change etc, manual work is far too exhausting....what am I meant to do????? Xxx
Wanting advice of when to give up work and apllying for a higher rate of disability living allowance, to allow me to put my Heath First, Ive been diagosed neally 5yrs and have had ms for 10 please if anyone has any advice?
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
