Have you told anyone?

I am waiting for an MRI of brain and spine to confirm or rule out MS. Neuro said we will do MRI before we think of doing a LP. People know I am not myself and friends know I have loads of tests and hospital visits, but no one has asked what I think it is? My husband knows that they are looking at MS and so does my sister, she has had RRMS for 16 years, but lives abroad, so Skype and email but not the same. Both my parents are dead. Been to see my cousin, a nurse today and was going to tell her that they think I have MS, but never seemed the right moment. I just feel so fed up, I can’t sleep, have no energy, got headache all the time, can’t see properly, can’t be bothered to do anything. In pain, pins and needeles and just feel odd. Being treated for depression, before I has MS symptoms this last time. Feel like a right hypocondriact! If you have spots or a broken limb it’s easy to see the illness. Also what if I tell people that I may have MS and they say it’s not? Rung hospital today looks like another 3 weeks wait for MRI, and going to see eye specialist in 2 weeks. Nearly crashed car today and have not made children any tea, no energy. So looks like it will be fish and chips tonight!

Apple Pad,

I know exactly how you feel. I have had lots of tests, as far as I know they have all been ok…but I’ve still got all the symptoms.

People know that I’ve got ‘problems’ but I think they think that Its just a phase that I’m going through. (I wished)!

To me, they don’t really seem bothered, or to care a great deal. I’ve been told It’s not MS…but they don’t know what it is.

So I really do feel that people think I’m making it all up…even the GP wants to send me for councelling!

You are not alone, try not to worry.


My heart goes out to you Apple pad, I hope you feel better soon. Do try to take it easy whenever possible, as stress can only make things worse!

I haven’t even had any tests yet but pretty much everyone close to me knows my fears. It couldn’t really be helped, as depression hit me like a ton of bricks which resulted in me going into A+E with suicidal worries. I didn’t want my family to know because I didn’t want them to worry about me, but they ended up knowing anyway because the docs had to tell my parents (whom I live with).

My partner does think I am a hypochondriac, but is trying hard to be supportive of me. I think he feels rather helpless. :cry:

But I say there is no shame in telling people you are worried it could be MS and it ends up that it’s not. None at all.
I am saying this to everyone who doubts me: that if they were experiencing the symptoms I am, I am very sure that they would be worrying they had MS, too. I have all the hope that I don’t have it, but - for the good of my health! - I must prepare myself for any outcome.

Hi Apple pad. Yes I have told people. Not lots of people, but a few close friends and family members. Ive gotta say I have played it down tho, as there are probably only two people who know how I really feel. If its not MS (if/when I get dx) then thats a good thing, but most people who know me know I am not feeling well etc. Ive become a bit of a recluse really. Sitting in the house when eyesight is really bad, and only driving when I feel safe to do so (not often!). I havent been to work for a bout 6 weeks now either as cant get there when I cant see, and no point in being there if I cant see properly anyway! Its really boring sitting at home too as I dont have the energy to do much at all. My two little dogs havent been out for a walk in a good couple of weeks (tho I do have a garden), and my daughter is happy with me making something really quick and easy (stirfry) for dinner most days. Its crappy isnt it, and yep I too feel like a hypochondriac as I ache from head to toe, have tremors, jerks, bad eyesight, back spasms blah blah blah… none of which you can see on the outside. I have an endless round of GP, optho, MRIs, neuro appointments etc. I didnt want to be ill and had big plans for this year, so feel bit sorry for myself too :frowning: oh well, Im off for a nap now xx

Hi Apple pad

My family and best friend know that I am being tested for MS, it was actually my mum who pushed me into going to the doctors.

You are right if people can’t see what is wrong then they don’t think there is anything there. My husband said to me a couple of weeks ago that he doesn’t think its MS as I have been ‘fine’. What he can’t see are little things like feeling exhausted or having numb toes etc.

Do you have a best friend who you could confide in? It may help if you can offload some of your fears to someone who won’t judge. If not then there are plenty of people on here who understand what you are going through and will support you.

Hope you start to feel better soon and remember you are not alone

Claudette x

Hi Apple x

In November - when the neuro spinal doctor said that he thought that it was a demyelating disease not my discs - I was literally thrown into months of confusion - yet at the same time all the odd symptoms & ‘episodes’ I had been suffering over the last few years suddenly made sense!

I kept it from lot’s of people - even close friends & family - but then found myself blurting it out to random colleagues!! My mouth just ran away with me - in the lift, the foyer - just before a meeting!! - some poor sod would inadvertently say 'morning, how are you?" and I would burst out “Not too good - they hink I’ve got MS!”

I was mortified after I’d said it!!!

Then when I went ill this time in February I blurted it out to my boss who then had to tell personnel etc. Everyone knows now! My friends, family etc!

I must admit I do worry that if it’s not MS people will think I’m some kind of weird drama queen! I just hope that I’m given an alternative diagnosis - even bubonic plague - that explains why I’ve been so ill!! xxxlol xxjenxxx

Hi Kizzy,

I too feel a little bit like that!..they think that I don’t have MS…but I still have all the symptoms…and now I feel a fake.

They haven’t given me a dx yet, they say that I’m a mystery…that It could be fibro, but I don’t have the usual ‘sore spots’.

I won’t be seeing anyone now, until I see my consultant for my Ulcerative Colitis, he seems to be the only one that is Interested in my symptoms at the moment. Maybe I can talk to him and see if he can sort out some more tests.

It just seems that If you don’t have a dx then people will think you’re making it all up!

Good luck,

(by the way you do make me laugh with your posts.)


Hi Wendy x I so understand how you are feeling! I keep sayng to my hubby ‘what if they can’t find what’s wrong?? What if people say this or say that…’ Funny enough I said it tonight - he just keeps saying - “no matter what it is you know are ill - I know you are ill - everyone who knows you knows you are ill - you just can NOT fake so much of what has been going on with you - and whatever it turns out to be - MS is just a label after all - and who cares what other people think anyway!!”

That made me feel better - so I’m saying the same to you!!!

“Wendy - no matter what it is you know are ill - I know you are ill - everyone who knows you knows you are ill - you just can NOT ‘fake’ so much of what has been going on with you - and whatever it turns out to be - MS is just a label after all - and who cares what other people think anyway!!”


PS he also always says he loves me - cos I’m nuts!! Glad I cheer you up a bit!!!

No, I haven’t told anyone apart from my husband – and I kind of HAD to tell him… well… because he’s my husband. The one time I even ventured into telling someone, she asked ‘how my health was’ and I got as far as “we’re doing some more tests, so I’ll know more then”. The next line out of her mouth was “or maybe you’re just not feeling well because you do too much”. That’s the line EVERYONE gives me, as if I’m overrun with stress or something. Yes, I lead a busy lifestyle but I’m not overly stressed out about it, nor do I do anything that I don’t want to. I know how to say no. sigh

If and when I get an official diagnosis, I’ll tell those closest to me - but have no plans to tell anyone else in the mean time. There are days when I’m convinced that I’m a hypochondriac. I don’t want anyone else to think I am, too.

I totally sympathise heather I feel the same, I’m worried people will think I’m a hyperchondriac. I’ve told my husband and 2 close friends. I’ve not told my mum because, as much as I love her she will do my head in lol

I haven’t told my mother, either. She’s a retired nurse. She’d start diagnosing me herself and put all kinds of ideas in my head… I’d be a basketcase thinking about all the possibilities!