How do you tell people about MS when you haven't been diagnosed?

New diagnosis and before diagnosis
1

So basically around the beginning of September I started experiencing a few MS like symptoms: tingling in different places, blurred vision, heavy/weak feeling legs, and some others.

I told my mum about it and at first she just laughed it off as me having one of my ‘hypochondriac moments’ but when I stressed to her that I really think something is wrong & told her about the different symptoms I had she actually got mad at me and went on about how I overreact to things and that I’m being ridiculous. She even told a lot of my family members at my birthday a few weeks after like it was an ‘oh look how silly and irrational my daughter can be’ joke, which just made me feel like I’m an idiot and that I have no one to turn to.

All of the symptoms pretty much went away (except the eyes, which I now have glasses for and the occasional tingling feeling) until tonight where my legs have started to feel heavy and weak again. I want to be able to talk about it to someone but now I’m scared that people will tell me I’m overreacting and just brush me off, or they’ll humour me but not actually believe what I’m saying. (it doesn’t help that when I went to the doctor he just brushed off my symptoms as ‘stress related’)

So what I want to know is how some of you guys dealt with that. Did you tell people? Were they supportive? How did you tell them?

2

hi mako

my circumstances were quite different to yours as i was 50 at the time and could be a strong minded stroppy cow!

if you dont know what to tell people just say that you’ve been having weird symptoms and a neurologist is dealing with you (if one is).

if you havent been referred to neurology then see your gp.

if gp won’t listen, see another gp.

a good gp is a godsend with or without ms because he/she can help with symptom management.

good luck

carole x

3

Hello Mako,

Firstly have you seen a neuro after being referred by your gp? If not then you ned to make it clear to your GP that there is something wrong and politely insist that you want a referral to a neuro, who then can give you tests to establish what is wrong. I waited until I had a definite Dx before telling anyone, then they had to accept I had MS. It was very cruel of your mum to do what she did and I sympathise with you as it’s only you who knows how you feel. I suggest you go back to your GP and be strong with them. Good luck and please keep us posted.

Janet

x

4

I haven’t been referred to a neurologist yet. When I went to the doctors he said it was just stress and then referred me to the opticians for my eyes. I’m going to make an appointment with my doctor tomorrow though.

The tough thing is I’ve also been having problems with my throat for the past few months which I’ve been to the doctor about several times and they keep sending me away saying it’s nothing (despite the fact that the problem isn’t going away) so I’m worried that if I go in there talking about these symptoms I’ve been having while also having the ongoing struggle of having my throat problem acknowledged they’re just going to think I’m a huge hypochondriac who keeps taking every symptom I have and turning it into a huge issue (which I really don’t think I am. I am a bit of a worrier over my health but I’ve never been so persistent with trying to get things properly seen to as I am with these).

I just really want to be able to tell a friend or family member about my worries and have them believe my symptoms are legitimate and something that could be potentially serious. Especially since I’ve read how hard it is to get a diagnosis, I don’t want to go through all that trouble with no one there for me.

It wasn’t that many years ago that my mum would come to the doctors with me, so it feels weird doing this all alone.

5

Well, obviously, it’s a very personal decision, but personally, I wouldn’t start discussing a serious disease with people unless or until there’s some independent support for your suspicions. If you’re not even being investigated for MS at present, I think it’s premature and even unnecessarily worrying to start putting about the idea that it’s what you have.

I can’t say for sure your hunch isn’t right, but if it does turn out to be “nothing” - or something very minor and fixable - nobody is going to thank you for having raised the prospect of anything so serious, and your chances of being taken seriously if you have any future health problems fall away dramatically, as you get known for “crying wolf”.

If your vision problems were correctable with glasses, that doesn’t point to MS, as typical MS vision problems are caused by damage to the optic nerve (the nerve behind the eye that carries signals to the brain), and nothing to do with the eye itself. So vision problems caused by damage to the nerve aren’t fixable with glasses, as they only compensate for defects of the eye. They can’t do anything about damage to the wiring behind the eye, as the eye itself is still working correctly - just signals from it aren’t reaching the brain properly, so a different kind of problem.

Not feeling well and seeing the doctor - I think it’s fine to be open and honest about that. But to go further and start suggesting your worst fears I think is a step too far, and there’s plenty of time for that if MS (or anything else serious) begins to be suggested.

I’m not saying there is nothing wrong, but I think you should keep revelations to friends and family to what is factual at the moment - not things there’s no proof of yet. It’s fine to say: “The doctor thought it was stress, but I think I might ask for more tests”, but you do not have to go as far as saying the MS word, as you’re a very long way from any such diagnosis yet.

It’s what’s known as a diagnosis of exclusion, which means it will only be considered when all other plausible explanations have been ruled out - including simple things like vitamin deficiencies or hormone imbalances. The incidence of MS is still quite rare - only about 1 in 800 to 1 in 1000 people in the UK. So it’s not a likely thing for anyone to have - but there are over 100 things that can cause similar symptoms, so try not to get ahead of yourself.

Tina

x

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