MS / anxiety

[Lookingforadvice123]

Does anyone who suffers with anxiety have a massive fixation on MS? I have general anxiety about a lot/most things, but it's particularly bad with health: my own, my DH's and my parents (don't yet have dc!).

For at least 18 months now I'm convinced I've got / will soon get MS. I went to the doctor about it recently as ive had an eyelid twitch literally for about 7 weeks now (sounds a ridiculous reason to go to the doctors, I know) and told them about my MS worries, as I also seem to get a lot of random muscle twitches and pins and needles/weird tingling or vibrating sensations. The doctor did a couple of basic neurological tests on me, testing my eye movement and basic strength, and said nothing concerned her, but to come back if the eye twitch continues or gets worse.

Does anyone else have a similar anxious obsession? Any tips on coping? Sometimes I'm fine, but other times when my 'symptoms' seem bad, I literally convince myself I've got it and get a bit distressed. I've been to the doctor about my general anxiety before, but the solutions ie anti depressants or group therapy weren't something I wanted to pursue.

Any thoughts or experiences would be appreciated x

[nikki1978]

It is called health anxiety. There are forums and books on it as it is very common. You need something like cbt which your doctor should have referred you for. I have it and it is horrible. The eye twitch is tiredness and/or anxiety. There are many physical symptoms of anxiety which doesn't help!

[NanaNina]

Hmm........I used to have a massive fixation on MS many years ago when I was a young woman (I'm an old one now) and was utterly convinced I had it - not sure why as I think the only "symptom" I had was dizziness and I read that it was a symptom of MS but later discovered it was a symptom of anxiety! I saw a neurologist in the end and he just sent me packing with a flea in my ear - felt I was wasting his time I think. I've had friends who had the same fear - one friend stayed in bed for a month as she convinced herself she couldn't walk!

Then I convinced myself I had throat cancer and wouldn't accept the GP saying I hadn't so paid to see an ENT specialist and didn't believe him either, when he said I didn't have any kind of cancer. There have been other things over the years. This is definitely health anxiety and I think it's very common. Sorry I don't have any tips on how to cope - it's worse now we have Dr Google of course cus that can take you anywhere you want to go.

Maybe therapy/counselling would help as I think the things that worry us in our adult life are "left over" from our childhood. My parents were always very anxious about illness and made a great fuss of us if we were ill so I think that unwittingly passed that anxiety on to me. Can you think of your parent's attitude to illnesses and anxiety -might be some clues there for you to consider.

[PortHiccups]

Yes. Have nc-ed for this post but am a regular.
I have had a similar obsession since my teens. I'm now 35.
Will tell you about it more later when I have more time.
It used to occupy 90% of waking hours (& stop me sleeping), get me referred to shrinks at regular intervals, seriously interfere with life. Not any more. Will elaborate later, but do you have specific questions?

[MiddletonPink]

Very recently it has worried me.

I have fibromyalgia which can overlap with ms symptoms. I have have severe anxiety. Two weeks ago my foot went numb and had been very cold. GP has said I need MRI scan. I do wonder about all my symptoms and whether it's ms.

[Lookingforadvice123]

Porthiccups, I guess my questions would be, did you have any physical 'symptoms' alongside the anxious thoughts? If you did what were they? And why MS specifically? For me, I don't think it helps that I'm 27 - a common age for MS to start occurring!

congratulations on it not dominating your life anymore! How did you do it?

Re the eye twitch, I've had them before but this has literally been every single day for over 7 weeks, can't remember exactly when it started but it was before 5th October!

[Lookingforadvice123]

And forgot to add - my doc mentioned CBT but only group talking therapy was available on the nhs. I have looked at private sessions though which are about £40 an hour in my area. I think I might seriously consider it, when I have a bit more disposable income.

[NanaNina]

CBT should be available on the NHS, but there are a lot of books on it on Amazon that are quite cheap and could be helpful.

[PortHiccups]

Again I only have a few minutes but, briefly, I have had so many "symptoms" over the years that I couldn't possibly list them.
I also gently suggest that you may be seeking reassurance by this question? I know very well from experience the desperation for reassurance which can come with this, but in the long run it's a major factor in keeping the whole thing going.

For me, CBT wasn't really the thing in terms of intervention. I found that the exercises got me more and more into knots of thinking. However, reading up on the basic model CBT of health anxiety is useful (look for Paul Salkovskis). MS is a really common focus in health anxiety, by the way.
Personally, the most helpful book I've read has been Eckhart Tolle's The Power of Now.

You can never be sure whether you've got MS (or most other diseases). You might have it, you might not. I know that's not easy to live with, but you can learn to tolerate it (if I can, anyone can!). Stuff happens to people. Life can be messy, hard, painful, devastating, fantastic, funny, joyous, and so on. It's a series of moments and no two are the same; and getting MS, while undoubtedly very hard, will not change that. It's still a series of moments, some harder, some easier. And then, whether or not you have MS, you, and everyone else in the world, will die.
If you do have MS, how will it affect how you live IN THIS MOMENT, NOW? I know this is not cheery, exactly, but it's the kind of thinking which has allowed me to move away from being dominated by this fear.

Oh, and try to focus on helping other people as much as you can. Volunteer. It's likely to help others, and it sure as hell helps the helper (to stop focusing on your own health/experiences).

All the best, OP . I know how hard this is.

[PortHiccups]

And to answer your "why MS" question, for me it was that a close relative was severely affected, that I have lots of "risk factors", and that I am generally anxious. And MS is particularly easy to focus on because of its massive list of symptoms and possible timecourse.

[AugustaGloop]

I had an episode of optical neuritis (with some other symptoms, eg vertigo, at the same time) last year. I had an MRI which was not perfect. I do not have a formal diagnosis of MS (at this stage they call it clinically isolated syndrome) because there is as yet no evidence of "dissemination in time" (I have had 2 subsequent MRIs which showed no new lesions and have had no further symptoms). I have been told that 80% of people who had the symptoms I had go on go get a diagnosis of MS. That is scary. I will have MRIs twice a year for the next year or so and will then go down to once a year assuming all continues the same - I have private healthcare through work so am well monitored). Initially I found it very difficult. I really hate uncertainty and obviously the idea of MS is scary. Any time I had pins and needles I would panic (even though there was an obvious reason for them, e.g. I had been sitting on my leg).

I did, though, adjust surprisingly quickly and rarely think about it now except when I am due an MRI. 2 things helped. One was focussing on practicalities (checking my income protection policy, finances etc, finding out what my rights would be under the Equality Act, thinking about my job - my job is very pressurised and there is a link between MS relapses and stress, also where I live - a terrace with lots of stairs). I have not changed anything, but have thought about what I might do next if I do end up with a diagnosis and decide I need to reduce stress). I therefore feel a bit prepared.

The other thing, as PortHiccups pointed out, was to focus on getting on with life and making the most of it. MS does not affect me physically today (and may never do), so I have decided not to let it affect me mentally today either.

[Lookingforadvice123]

Porthiccups thank you for your gentle question, but yes I am absolutely 100% looking for reassurance! That's a massive part of my life, I seek reassurance from people who are in no way qualified to tell me if I have MS or not...my dh, parents, friends. Unfortunately your other lovely words don't have a positive effect on me, as you say "would my life be worse with MS?", my answer is 100% yes! If I had MS I would not be able to live my life the way I do today. And that terrifies me.

[Needtoemigrate]

There are people like myself and augustagloop who are living with a strong possibility they actually may have ms and I feel stressing the bad points of how much your life would worsen is quite selfish when it isore due to anxiety than actual really dealing with it.
I understand that anxiety is bad but stressing how awful life would be to people who it is actually a reality is quite self centred.

[lemisscared]

me too - although, i think i have filed the MS one and have moved on to other worries :)

The thing is, alot of the symptoms you'll be worrying about are actually symptoms of anxiety. That horrible feeling of pins and needles in your head - thats adrenalin, a stress response. I had tingling in my fingers, my legs, my face - felt i couldn't swallow. Palpitations, the works - until i went to the doctors like you did, she did the neuro exam and told me i didn't have MS and that it was most likely anxiety. The symptoms pretty much went away after that - now if i get them i recognise them for what they are, physical manifestations of anxiety.

I also convinced myself i had throat cancer - it was my tonsils I was actually beyond hysterical.

It is much better now i recognise i have anxiety, it very much used to focus on health but i subesquently have had mental breakdowns and am now anxious about, well, everything really :( but the health thing seems to be in perspective.

You say you don't want medication? without being flippant, if you had MS you haven't got it!!! you would take medication. You don't have MS but you are unwell, you have anxiety and that is an illness that untreated can be equally as debilitating. Maybe have a think about it. I know what you mean about the exercise, i find im more anxious after and during exercise.

[lemisscared]

Needtomigrate - the OP isn't being selfish, i do understand where you are coming from but people who suffer from anxiety have a tendancy to catastrophise (spelling!) and paint a picture full of horror and panic. It allows a though to just snowball and snowball. I recently had a health scare, which thank god turned out to be something benign, but i promise you I was practically choreographing my own funeral, imagining my DD crying at my graveside. The day i got the all clear my friend was diagnosed with cancer - i coudln't understand why she was so calm (ok i probably didn't see her at her worst) but she hasn't died, yes it was fucking awful but thankfully she has just finished chemo and is clear. The reality is, often not knowing and imagining all sorts in your head is sometimes worse than actually being faced with a condition and having to plan and deal with it.

Anxiety is a debilitating illness, thankfully it is treatable.

[Lookingforadvice123]

Apologies needtomigrate if that came across that way, but lemissscared has hit the nail on the head - I catastrophize everything. The reality of living with MS is surely to be very different from what I think about when I'm at my most anxious, but anxiety turns me from a reasonable rational person to someone else. After having spent most of the night up worrying about my 'symptoms', Ive decided to definitely pursue CBT, even if I have to pay for it. It's not just my own health I worry about but DH's as well - we had a particularly bad couple of months this time last year when he had a slightly elevated bilirubin level in a blood test, and I was convinced he had pancreatic cancer (he was 30 at the time).

[justtwomorechances]

Can I ask why you have fixated on MS?

I do have MS, had a formal diagnosis 10 years ago, after a number of episodes, including optic neurosis (not sure of the spelling). I had no inkling prior to the discussions leading up to the diagnosis that that may be what it was, despite having a family history. Strangely, since then I barely think about it. Very much a "head in the sand" approach, but I have a highly pressured career which I love, which in turn allows me to have a way more than comfortable life. It is described as a "life-limiting" disease, and not allowing it to limit my life when I am well is my way of dealing with it.

[Lookingforadvice123]

Good question. I think there's several reasons for me fixating on MS, first because when you Google a lot of my symptoms (stupid to do I know) MS is what tends to come up. Another big factor is my age - I'm 27 and know that people are most commonly diagnosed in their late 20s /early 30s. Also the fact that it's not hereditary, and that there's nothing you can do to prevent it - I know you can't necessarily prevent cancers, but you can take measures eg eating healthily, not smoking, going for smear tests etc.

Also, my DH's uncle and a close friend of my mother's both have it, so to me it seems "common". Both of these people were "lucky" in a way to be diagnosed later than average, in their 40s/50s, but both have seen a quick development of the disease and are very limited in movement, both in wheelchairs etc.