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My mum's got diplopia!

Ever since I was diagnosed over four years ago, my mum’s reaction to almost every symptom I’ve had has been: “Oooh, I get that too!”, to the point it’s been infuriating, and I have said: “For goodness’ sake, Mum! You DON’T have MS! Nobody gets to 70+ without noticing they have MS!”

Of course, none of these things have been objectively verified or investigated, and she has a history of phantom illnesses going back 20 years or more. It’s worse since she got the Internet and Google, as one minute it’s heart trouble, next minute it’s her gall bladder, then it’s ehler’s-danloss syndrome, and so on, and so on - all self-diagnosed, and none of it backed up by any medical evidence whatsoever, as all she does is moan, and never seek formal investigation of any of it.

So I’ve dismissed it all as a load of rubbish, frankly. I remember Dad saying, years ago: “She’ll outlive us all!”, and so far, he’s been right - he’s been gone six years; I’ve got sick, and so has my sister (she remains undiagnosed).

Except that Mum went to the optician’s this week, and he said there was something wrong. While he was going through testing different lenses, for her prescription, he asked: “How’s that?”, as usual, and she said: “Oh no, I can see double with that!”

So he seemed a bit surprised, and tweaked a few things, and said: “How is that now?”. She said: “No, I can still see double!”

So he did a few more tests, and concluded her left eye is not tracking properly, and there’s a problem with the eye muscle (he happens to be a GP as well).

He was a bit concerned, and wanted to see her again in four months. She said: “Well, it’s not new; we have spoken about it before!”, and he went back through the notes, and found there was indeed a note of it some time ago, and it doesn’t seem to be any worse, so he said: “OK, six months, then”.

She says she doesn’t notice it in everyday life, except very occasionally, which she put down to having had a drink. She said that years ago, in her thirties, when we used to have a glass or two of wine or cider with Sunday dinner, she used to catch sight of the TV out of the corner of her eye, and see that it was double. She said to Dad: “The wine must have gone to my head: I’m seeing double!”

He exclaimed: “What? It doesn’t take much with you; you’ve only had half a glass!” - which was true.

So now she’s wondering if the drink was just coincidence, and she’s actually had a problem for quite some time.

And I am also wondering if I’ve been unfair saying: “Don’t be so silly!” when she has kept on as if she had MS ever since my diagnosis.

I’m wondering what the prevalence is of weak eye muscles in people who don’t have a CNS disorder, and whether she’s been onto something all along.

We know without a doubt there was MS on my father’s side of the family - albeit quite distantly, so I’ve always assumed the “risky genes” must have come from his side, which made me all the more dismissive of the: “Me too!” refrain, every time I mentioned any symptoms, as I was sure that if there was a familial tendency, it wasn’t on Mum’s side! I also thought I was pretty late (mid-40s) to finally cotton on to anything being wrong, so the chances of Mum getting to her 70s with MS, without anything serious happening, and in fact, without even noticing, were pretty slim! I consider I’m doing pretty well, but don’t realistically think I’d have made it another 30 years without noticing I wasn’t well. And unlike Mum, I never took any notice of anything - I was NOT preoccupied with my health. But even I got diagnosed eventually. So is it really likely that anyone with health anxiety as strong as my mum’s would get to her 70s without discovering she really did have something serious? She can’t have had anything that bad over the years, as she would have ended up at the doctor’s - same as I did.

So just wondering, really, if it’s just a bit of a freaky coincidence. Of course, I knew what she on about straight away - not because I’ve had it personally, but reading accounts here. So how likely is it that she would have it from an unrelated, and indeed benign cause?

This is the first time I know she’s not imagining one of her many complaints, as someone has actually been able to find something.

Tina

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wow tina!

now don’t go beating yourself up about it.

it might be something else that is causing it.

i’d imagine that you will be feeling anxious though.

hugs

carole x

Well, on the positive side, if she does have undiagnosed MS, it’s been pretty benign, as she’s 75, and can still get up two flights of stairs unaided, AND walk about 3/4 mile uphill to the local supermarket several times a week, although she no longer goes every day.

So to be honest, if it were to turn out at 75 that she has MS, I don’t think she’d have a lot to fear, as obviously she’s got this far without anything drastic. At 75, is it suddenly going to “turn nasty”? I think probably not.

Just a bit concerned that I might have been saying: “Oh, nonsense!” when she wasn’t imagining she had similar symptoms.

Of course, she is absolutely nowhere near being diagnosed with anything, and may never be, but it was certainly an odd discovery.

T.

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This doesnt sound sound strange to me, I was diagnoised in 2012 but looking back I can now see things going on for 10 years before but as my mum always had the same symptoms as me I thought it was normal and we used to joke we were 2 peas in a pod. But my mum hasnt got ms she had a stroke a few years ago and had an mri so it would have shown up. Now when ever she mentions something I cant help but think but you haven’t got ms I have. At the moment she has stomach ache which has been investigated and nothing found to me it sounds like the hug but it that that I just relate things to ms. I really now dont know but I should a bit probably bea bit more understanding but theres always something. Her gp thinks its anxiety related. We will probably never know xxx

Hi Zoe,

Thanks for your reply. Yes, my mum is a very anxious person, although I’m sure that couldn’t cause weak eye muscles.

But many of her other symptoms could be ascribed to anxiety. It’s conspicuous that she didn’t have any of the other “MS-like” symptoms until four years ago, when I was diagnosed. In other words, when she didn’t know anything about MS, she didn’t have any of the symptoms! Funny that, isn’t it?

The trouble with someone who’s been insisting they’re not long for this world for at least 20 years is you can’t tell when they really do have something serious. In general, she’s been the healthiest of all of us - certainly better than my poor dad, who really did have a horrific disease - from which he died, yet never - or hardly ever - complained. One day he cried because he fell over - wouldn’t we all (it wasn’t MS) - and shortly before he died, he told me privately that he “couldn’t go on” - but I don’t think that was complaining - it was a realistic assessment of how he felt, and it helped me when he did go (which may have been part of the intention), as I remembered him saying it, and tried to think of it as he got what he needed, i.e. release.

My mum has the normal health niggles that you’d expect of a 75-year-old - including osteoporosis, which so many older women have (yet you’d think she was in a minority of one!) But none of it is anything compared to what poor Dad went through, yet she moans ten times as much, so we’ve all got used to taking it with a pinch of salt. It’s impossible to tell what is real from what is caused by too much Googling - apart from this diplopia - which oddly, she was NOT moaning about, but was discovered incidentally. So it’s one of the few things I know is real, and not just a morbid preoccupation of hers. It’s so difficult when someone’s always competing to have the “worst” illness, and you don’t know what to believe.

OK, I know this diplopia is real, but now I’m confused about how much of the rest is real, and whether she might, in fact, have MS, when I’ve been rubbishing the possibility.

With my dad, you absolutely knew if it was anything serious, because he wouldn’t say anything at all unless it was! But my mum interprets the slightest ache or pain as potentially fatal - so you end up taking no notice of any of it, otherwise you’d be in a constant state of anxiety.

Tina

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Hi Tina

To answer your question, you do not need MS to have Diplopia.

The trouble with Diplopia is that you do not know just what is causing it.
In descending order of probability:
Is it the muscles that focus the lens part of the eye?
Is it the muscles that move the eyeball around in it’s socket?
Is it in the parts of the brain that control the above sets of muscles?

Orthoptics people tend to skip the questions, and come up with a physical rectification (ie prism lenses).
So do opticians (optometrists really) - but if a heavy correction is needed, they pass the buck to the orthoptists.

If I look back over my optical prescriptions, I see that I had a very mild prism lens for one eye (once) some years before the onset of what became MS. Five years into MS, it developed again, and I now have prism lenses for each eye. While only one eye needs correction, the idea is that both lenses can be given half the correction needed, so that both “see things the same”.

My wife (Parkinsons not MS) has it worse than I do, and had to have several sessions in Orthoptics and had to have two prism lenses to avoid a very heavy correction for one eye. Her Diplopia is horizontal, while mine is vertical.

The bright side of Diplopia is that it can be fixed - unlike MS.

Geoff

Thanks Geoff, it’s unlikely I would have read MS into it, if Mum hadn’t been saying: “me too” to almost every single symptom, ever since I was diagnosed.

It could be a misguided attempt to reassure (either herself or me) - i.e. try to pretend nothing is really caused by MS, and say: “Oh, everybody gets that - I certainly do!”

Or it could almost be an unhealthy kind of over-empathizing - i.e. she relates so intensely that she imagines she has the same thing.

Recently my two nephews were both diagnosed with joint hypermobility syndrome, and she suddenly believes herself to have been afflicted with that for years, as well. But curiously, I cannot recall her ever describing any of the symptoms before they were diagnosed, so it seems like a kind of suggestibility.

Which is why I’ve been dismissing ALL her illnesses and conditions as imaginary - excepting any she’s actually been diagnosed with. But now, with this diplopia thing, I’m beginning to wonder if I should have taken her more seriously when she thinks she gets everything I do.

I knew enough about it to tell her the fix is likely to be prisms - which she said the optician had already mentioned. But it doesn’t seem to be troubling her in everyday life - it was only discovered by chance, not because she’d complained of anything (haha - just about the only health issue she hasn’t complained of), so he hasn’t corrected it, for the moment, but wants to see her again.

Tina

Hi Tina, I totally understand what you are feeling because I had the same with my mum and it was only after she passed away that I really thought back and felt mean for not being more sympathetic to my mum.

She had lots of symptoms of MS but I was the one diagnosed she also complained of leg pain keeping her awake at night and loads of other symptoms which at the time I did not have but since she died I have been diagnosed with hyperthyroidism and PA which I think my mum must have also had.

Since I can do nothing about it now I drive myself crazy feeling guilty which only does me harm as I get stressed by it.

Try to not beat yourself up but maybe sound sympathetic to your mum even if you are doubtful of her symptoms being real.

That will do no harm and will make her feel you care which I am sure from reading your messages you do.

Ell

Thanks Ell,

I’m sorry to hear you have lost your mum, but you should not beat yourself up about things, either. Nobody lives without regrets. Perhaps your mum did have an undiagnosed illness, that you only later began to suspect. Or perhaps, like mine, she was a bit neurotic about her health. Either way, you can never know.

I’m sure you did support your mum, and do other things she was grateful for, even if it’s hard, sometimes, to be sympathetic when someone seems to have an endless string of complaints. And it certainly doesn’t get any easier when you are facing a major health issue of your own, while they have never been diagnosed with anything.

I am conscious that, at 75, anything could happen, so I do try not to get irritated (obviously I have not got irritated about the things that are clearly genuine, like this eye thing). But it’s very hard, when someone has made almost a hobby of moaning about their health, for the last 20-odd years. The word “hobby” is not sarcasm: I do think part of the problem has always been that she does not have any hobbies or interests, or even any real friendships. So reading up about health issues has become her hobby, which is what makes it so extremely difficult to tell whether I ought to be concerned or not.

My brother has been very good with her, and has tried to discreetly or not-so-discreetly point out that she has got to 75 without anything major healthwise, and many people do not achieve this! I know he is conscious that we lost my dad, and that I have now got ill with something serious, so he does try to explain to Mum that not everyone has been as lucky as she has - even as close to home as our own family. Unfortunately, she is a very “glass half-empty” kind of person, and never stops to think that reaching 75 with no critical health issues is quite a blessing. She is more frail than she used to be, but doesn’t need a stick or other mobility aid, and shows total lack of awareness that her own daughter has little chance of being as well at the same age.

So I just don’t know. The longer someone has been using their health as an attention-seeking tactic, the harder it gets to separate fact from fiction. I’m not suggesting for one minute she has lied about the optician’s findings: I don’t think she’s stooped to that yet. But it’s all the other self-diagnosed stuff that has not come from anyone but her. I didn’t believe any of it, but now I’m not so sure.

Tina

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