Hi everyone, I was told by my neurologist that she thinks I have ms…I took that as a dx but after reading posts on here I’m keeping my fingers crossed… Anyway, talked to some friends about this possible dx and have been surprised by some responses. One friend immeadiately told me how a friend of hers committed suicide because she couldn’t cope with her ms…2 other friends said they’ve probanly got it wrong coz I don’t look like there’s anything wrong with me! I’ve never moaned or complained about the pain & fatigue I have…not to mention all the other stuff. I went in to talk to my manager as I’m finding 6 night shifts hard going. She was full of cold and slumped in her chair with a pained expression…when I gave her the info she replied, " what, really?, you have symptoms NOW". I give up…I need lessons so I can put across how I feel. I remember many years ago having to see a counsellor for depression after the break up of my marriage…I felt suicidal at the time…( post natal n an aggressive ex) and told her that everyone thinks I can cope to which she told me that she’d only known me for 30 mins and that’s how I came across. Next time I’ll crawl along the floor clutching numerous tissues to catch my tears! I do all my crying at home as I feel too vulnerable crying in front of people…my fault I ssuppose I feel quite angry that people expect me to bare my soul to put across how I feel. Why is my saying it not enough. I’ve had so much trauma in the past that I only let very few people see the pain I’ve had. Rant over…just feel better putting it down n being honest about how let down I feel when I’ve always been there for ‘friends’
Hi I don’t think people can understand that you can look well and feel like rubbish at the same time. A lot of people don’t know what ms is let alone what it can involve. I’ve had similar responses myself since I was dx in October. I have found that reading the threads on this forum and the everyday living forum really helpful. I hope they become a little more understanding in the future. Em
Thanks Em, I just feel frustrated I think…my daughter said my friends see me as a ‘coper’ and don’t know how to be with me…I feel quite abandoned and left to get on with it but I don’t want to become an angry person so I’ll have to let it go. The people on this forum are so supportive of each other which is lovely
Ignorance. Ive had the exact same thing. The way i see it is, i have a family to support and provide for so have got to go on no matter how ifeel. And believe there are some days i cannot move. People do not have a clue and explaining how you feel to a dr is difficult enough let alone someone who knows nothing. You can guarantee one thing though, i bet those ignorant people moan the loudest when they have a minor ailment such as a cold. I bet they let everyone think theyre that bad theyre dying. These kind of people grip me
Oh mamabear!
You need a BIG HUG!!! Why do people always say “you look so well” when you tend to feel like absolute sh*t.
It’s like they expect you to come at them with the legs horribly mangled, and an eyeball hanging out! People say the stupidest things…
I never realised just how many people are out there feeling just like you do, until I came to this forum. You can let your guard down on here…you can’t hog ALL the self-pity for yourself. It’s for sharing! I suspect that 98.9% of the time you can look after yourself, and others too, but sometimes just dab that brake pedal and take your transport out of gear. We ain’t got to get to places if we don’t want to…uh huh.
Ali x
The sheriff. …yes I think you’re right…lack of knowledge and empathy seems to be the problem…and yes, my female manager had the ‘man flu’, no offence! 
Also, for some reason because I’ve talked to friends about poss ms they all want to tell me their physical ailments, what’s that all about! Thanks for the hug Ali…I needed it Your msg made me laugh coz its SO true… Would rather laugh than cry any day…
Hi Mamabear… Do you know what - I am new to this patient lark having been on the other side of the fence for many years too ( as well as being there for friends , family etc etc). I think NOW is the time for you to be thinking about you and not worrying what others think! Sounds like you need rest and understanding. I hope you can find ways to get some respite …x
Thanks Dee, I think I will try to let friends etc look after themselves for a while and have a bit of a rest. I know I will sound pretty stupid but I wonder if anyone can tell me about mri’s. I have a head and spine scan on Saturday. What symptoms would match to head mri and which to spine. Would leg problems show up lesions on spine and would cognitive problems show lesions on the head mri ?.. I also will be having emg/ncs test…no idea what that involves, thanks
It seems like a simple question, but it would need me to explain the whole nervous system to answer it
This isn’t exactly user-friendly, but it’s a good overview: http://www.columbia.edu/cu/psychology/courses/1010/mangels/neuro/anatomy/structure.html
Fwiw, leg symptoms would normally mean something going on in the spine and cognitive problems would always mean something going on in the brain, but there wouldn’t necessarily be visible lesions as there are lots of causes.
EMG / NCS is when they measure the electrical response your body makes to various stimuli. This explains it: http://www.webmd.com/brain/electromyogram-emg-and-nerve-conduction-studies
Karen x
Thanks karen, I will check that out when my laptops up and running again. Using my phone at the moment. Everyone is so helpful on here with information and support…and I’ve read some pretty funny ones too!
Mamabear, I got a very varied response from friends and family. Some were “I know a girl in work who has MS and there’s not a bother on her”. Or “Oh god, what are you going to do, how are you going to manage, oh I’d just DIE!” and some who make jokes about it.
These people are my friends though and they all mean well. They’re upset and shocked and trying to help in their own peculiar way. But there’s no harm meant in it. The only person who actually bugs me is my HR manager. When I dropped in my certs she basically escorted me off the premises she was so worried I’d fall or something. I kinda feel like “when/if I’m disabled then treat me like I’m disabled. But I’m not disabled NOW!”
I’m pretty open and when I feel like crap I’m open about it but usually with a dark sense of humour as opposed to complaining. I do a great Quasimodo impression when my leg is bothersome and dragging (the bells, the bells).
Of course, that wouldn’t be to everyones taste but that’s how I handle it.
Hi Meme, I know what you mean…I tend to use humor a lot with some friends and especially my daughter because I don’t want to worry her…although on xmas eve after walking round the shops for a couple of hours the tears were just rolling down my face from the pain in my limpy leg and sheer exhaustion. ( I said I was crying coz of the money id spent! Pretty worried abot work as I lost a good job a few years ago because of symptoms. I know working is making it worse but coz me eyeball isn’t hanging out my manager isn’t concerned so holding on for mri and hopefully some kind of official dx so she KNOWS there’s something wrong with me and I don’t have to sob into my tissue to get symptoms across. I’ve found some friends to be disappointing and hurtful but others to be quite surprising
Oh dear, dear - those friend reactions will ring many bells around here. When I was recently dx and quiety telling close colleagues, I had a private word with a lovely little college placement girl who was working with us. She opened her guileless cornflower-blue eyes wide and said, ‘Ooh, we had a neighbour with that - she died.’
I just about made it to the ladies before exploding with laughter (I didn’t want to hurt her feelings!). Bless the girl’s heart - it was the first genuine laugh I had managed in a while, and I blessed her unawares.
A sense of humour is a VERY important attribute when you are telling people that you have or might have MS! Things being unexpectedly funny is one of the things that keeps us all going, I think.
Alison
x