View Full Version : Why are there so many MS worriers?
I'm a big MS worrier....I never in my life thought that one day I'd be worried over a relatively rare disease like MS and yet here I am worried about my tingling pinky (on & off), the fatigue, stiff neck and so forth. I wish I had never googled my symptoms as this is what propelled me into a life of health anxiety and MS worry.
I noticed that a lot of people come to this forum with MS worries and that's conforting, surely it isn't possible that we all have MS!!
For those MS worriers out there, what were your symptoms, what did the doctor say and what made you convinced it's MS.
nomorepanic
07-09-10, 22:20
I noticed that a lot of people come to this forum with MS worries and that's conforting, surely it isn't possible that we all have MS!!
As yet no-one that has posted here about their worries has posted again to say they have it.
Every single case has been something else like anxiety.
That's good to know....:)...It's quite cruel how anxiety tends to mimic a neuro-nasty such as MS....
Roadtorecovery
07-09-10, 22:26
Google - can be greT if u need help to fix something around the house, terrible for medical help. Most peole have the common sense to know what medical issues need medical advice, why we use google? Reassurance.
Rule of thumb, type any symptom into google, u will easily find something nasty, type the word anxiety after the symrom, you will find page after page mentioning that same horrible disease symptom also to be a symptom of anxiety.
Take care
dr google is an awful doctor..
I found myself looking through pages and pages of stuff only to find that all my symptoms are a result of my anxiety..
even if you type in pains in hands.. horrible diseases pop up...
its not a good idea to use it for medical reassurance .. the best person for that is your g.p
stressbunny
08-09-10, 00:32
MS was one of my favourites when I was bad earlier in the year, and I thought about your question a lot. I think that it is simply because they both affect the nerves and nervous system.
With anxiety, you get the temporary effects such as numbness, pins and needles, dizziness etc and MS damage obviously has the same effect on the body but for very different reasons, and in a more devastating way.
The only way out for me at the time was to accept the symptoms and notice how they dissipated when I stopped focussing on MS...hence anxiety, not MS...you can't think yourself better from MS - but you can from anxiety!
I have had a little wobble lately, but am now confident it is not MS. If you check through some of my posts earlier in the year, I was CONVINCED it was MS..and I had so many symptoms (well in my mind maybe?)
I'm all confused as to how MS presents itself....I was told that symptoms are rarely vague and that they usually prompt people to seek medical attention right away and yet when I google (I know, not smart!!) it says that MS signs at the beginning are subtle and this is what worries me.....
This is what I've had:
Warm patch on thigh and foot (hot water bottle feeling, on and off) that lasted 2 weeks...
I googled this and freaked out and proceeded to have the following symptoms....
Tingling chin
Shakiness
Eyelid twitch
Chin twitch
Major fatigue
And finally tingling in my pinky (this is what's currently bothering me!!)
My doc says it's 99% not MS and yet I still dwell on the 1%!! I have a neuro appointment in November as I insisted to see one and I'm so nervous he'll find something.
Stressbunny, when I'm totally relaxed and about to go to sleep I have zero symptoms so that's a good sign I guess.....:blush:......My tingling pinky is on and off throughout the day, when I'm distracted I don't notice it as much.....
stressbunny
08-09-10, 01:03
don't dwell on the symptoms...there is such a big crossover with anx...instead focus on the fact that they are better when you are distracted. If that is the case...it MUST be anx and not something more sinister xx
shazandra yesterday i also started getting tingling in my left hand and my pinky and its neighbour in particular !!
but yes.. lets try focus on the fact that when we are distracted it goes away.
:)
I have also noticed the tingling goes away when i'm distracted. if i think about it, it comes back full force.
I must admit, I'm quite curious as to why so many people have anxiety about MS. Why not Motor Neurone Disease? Or Huntington's? Or Parkinsons? Granted, Huntington's is quite rare and directly hereditary, but the other two have (I think) just as high an incidence across the population as MS does, yet it's the one that people worry about.
I spent quite a lot of my early life worrying about MS, as my father died of complications to MS when I was 7. My dad was 35 when he was diagnosed and 42 when he died, and I will always resent this disease for robbing me of a life with him. I never got the chance to get to know him and have only a few memories of him, most of which are overshadowed by him being paralysed.
At the time, the medical profession didn't really know whether it was hereditary or not, so every time I fell over or coming about being ill, I was hauled off to the doctor and prodded. It's no wonder I have grown up with HA! :wacko:
So, is it about control, I wonder? With a lot of diseases, there are active things that you can do to help stop yourself getting them; eat a healthy diet, don't smoke, get enough exercise, don't like in the sun without sunscreen etc etc. But MS is different; there are no preventative strategies. There is no control we can possibly have over it. Also, it's more common in the colder areas of the world, and at the moment nobody knows why.
Also, MS is a "tragic" disease; when it strikes, it affects young people. Maybe people with HA have a particular attachment to the concept of tragedy? And think it has *got* to happen to them?
Going home
11-09-10, 17:45
It could be that with MS the symptoms are so many and varied that we are bound to suffer from some of them at some point, quite normally and without being ill. Googling symptoms that effect our nervous system as in twitches etc, its bound to come up with MS as part of the search results. Its not really google's fault as its job is to give you the best and the worst scenario, but being anxious people we always go straight to the worst!
Anna :)
stressbunny
11-09-10, 19:33
you are so right and it reminded me of what my neurologist told me. EVERYONE has these sensations, numbness, pins and needles, twitches etc, but it is out anxious state that makes us notice them, which in turn makes them worse
Thanks everyone for the responses....Funnily enough I frequent another health anxiety forum and the same day I posted this subject someone had posted the exact same thing!!
I've finished reading Claire Weekes book and I must say what a God send!! It has helped me tremendously.
I'm doing better, the tingling pinky has stopped, I started doing some physio moves for trapped ular nerves and it worked!!!
I still have a neuro visit in November, I think I need it for peace of mind....
beaniepudblue
12-09-10, 08:38
don't dwell on the symptoms...there is such a big crossover with anx...instead focus on the fact that they are better when you are distracted. If that is the case...it MUST be anx and not something more sinister xx
thats the ONLY thing thats making me feel better fight now. Knowing that if im busy and distracted i dont think about it and feel or think anything. Its only when im here on my own and i start thinking abut it its there
xx
I had many sypmtoms hun, numbness in fingers and toes, tingling, pins and needles, weekness in arms and leg, fatigue, hot patches, sensative patches, burning patches, eye issues, facial numbness, vibration in legs. Most have faded now, but weekness still comesa dn goes as do the numbness sensation. Mine started when i bent down to look at my son one night who ws really ill aqnd i had this electical crawling sensation that rushed from the outside of my face to the centre, really freaked me out so i stupidly googled and have had every other symptom since.
I currently keep messing my words up but i dont know if its coz im focused on it or im always preoccupied with other worrys
I have hadd and mri, evp, and seen 3 neros and all have said that i dont have ms!! if u read through my old post u will see how scared i was and how massive my sympoms were.....
Im sure u will b fine hun and im always here if u wanna chat xx
carteresque
07-12-10, 10:46
Another longtime MS worrier here.
In answer to the question in the thread title, as others have suggested, MS is a popular fear among those of us with health anxiety because (a) it's relatively common as 'rare' illnesses go (about 1 in 600 in the UK), and (b) it has a huge range of symptoms, some of which we all get from time to time, and so it's perfect worry-wart material!
My own history of MS worry started 10 - 12 years ago when I had a client (I'm a lawyer) with MS, who was in his mid-to-late-30s at the time (the age I am now). He had trouble walking and his speech was slurred and his thinking was clearly fogged (from the way he used to tell me the same thing over and over). He told me about his illness and how he used to have a demanding job and that now, there were days when he couldn't even remember his own name.
Some time around then I started getting regular headaches, fatigue and light-headedness. For some time I thought I had ME/chronic fatigue syndrome, then I settled on MS. I read up all the symptoms and worried myself sick about blurred vision etc. When I bought my first property 10 years ago, I chose a ground floor apartment because I thought that would be the best option if I ended up disabled in a few years' time. I decided not to look for a girlfriend as I didn't want to burden anyone with my deteriorating condition.
For around 3-5 years I was convinced I had it, and avoided getting my eyes tested as I knew the blurred vision (images above and below high-contrast letters, for example) would tell them I had MS. Then, around 2003 I think, I finally went and got my eyes tested and found out that my blurred/double vision was in fact astigmatism, which was perfectly corrected with new glasses and contact lenses.
After that I started to realise how silly I was, and the symptoms faded. I met a girl, got married, had a beautiful son last year, and felt great (but tired, as all new parents do). Then I started getting muscle twitching which kept me awake all one night. Googled it and of course decided that as I didn't have ALS/Motor Neurone Disease (which is what most people with muscle twitching seem to fear), it must be MS after all! However after some months that settled too, and it was only in February this year that my MS fear came back, when I developed severe shoulder/arm pain which a physio put down to nerve root irritation in my neck. It's mostly better now, but when my GP said she was considering referring me "quickly" to a neurologist if it didn't clear up, I immediately started worrying about MS all over again, which I've been doing ever since.
In the last 10 months I've had all sorts of MS symptoms - numbness, tingling, facial pain, lightheadedness etc - all of which have come and gone and I've been reassured by the fact that rarely do I get more than one at a time. It's as though my brain is concentrating on one, and when another symptom comes up, I start worrying about that and forget about the other one, which then goes away.
I've recently noticed visual snow, and the blue field entoptic phenomenon, both of which I don't really think are MS as they're quite common and present in both eyes (optic neuritis, the MS visual problem, apparently occurs in only one eye normally). However I do have an ongoing minor visual disturbance in one eye which first arose - or I first noticed it - around the same time I started worrying about MS with the shoulder problem in February. It sound similar to the one described by misscharlie757 - a small area of altered vision to the right of my field of vision in my right eye, but I only notice it when I'm looking at something with a vertical line to the right (eg the right hand page of a book, or a dialogue box on a computer screen, like the one I'm typing into now) - and even then it's not always present.
I've spent whole days scouring Google news for 'multiple sclerosis' and part of me - that still thinks I might have MS - just hopes my symptoms don't get worse until the new drugs are widely available. I also keep a running note of how long it is since the shoulder symptoms came on - almost ten months now - in the hope that if I get to one year without anything major happening, I'll feel it's less likely to be MS with no relapses in that period.
Sorry to go on for so long. Just offloading a decade or more of health anxiety...
"In the last 10 months I've had all sorts of MS symptoms - numbness, tingling, facial pain, lightheadedness etc - all of which have come and gone and I've been reassured by the fact that rarely do I get more than one at a time. It's as though my brain is concentrating on one, and when another symptom comes up, I start worrying about that and forget about the other one, which then goes away."
I take comfort in that I usually only have only one symptom at a time, granted thy all tend to beskin/neuro related but they're never simultaneous which is one of the ways MS presents itself.....I currently have a buzzing toe (more noticeable at night in bed) and when I force my brain to focus on my thumb for example I totally forget about the toe and my thumb statrs buzzing! The mind is such a powerful thing!
MS is unfortunately the perfect disease for health anxiety sufferers to latch onto....The symptoms are varied and yet vague (according to google!), it's highly mediatized and it affects the CNS just like anxiety....
I think in the end it all comes down to symptoms. If you line Anxiety symptoms up along side MS symptoms and compare, they are identical..
The other night I researched MS just to see why I fear it more so then anything else and when I went through the symptoms, everything is on the same list as Panic Attacks and Anxiety.
All in all, we have to trust our doctors. Long before I found out what my problems came down to, I had a doctor tell me to stop using google, it'll make you believe you are dieing tomorrow..I've had all the tests, been to numerous doctors and the ER. None of them suspected anything else other then Anxiety.
I went through a period of worrying about MS. I thinks its such a common worry as anxeity can mimic some symptoms.
I just had to learn to trust the Dr on that one:ohmy: and i've been fine since and this was about 3 years ago.
Laura.xxxx
westofengland
08-12-10, 20:28
People with health anxiety tend to obsess about the big headline terrible diseases - cancer, hiv, heart disease, MS.
For example, I worry I have been exposed to asbestos when doing some diy three years ago. So I am worried i have got the really bad asbestos disease (the lung cancer), rather than benign pleural plaques, which are much more common in asbestos exposure.
To return to your case, I'd say it's because MS gets a lot of exposure in the news, it's a scary disease, and we HA sufferers tend to catastrophise and always expect the worst
scouser1959
20-04-11, 20:58
hi well here is my experience, i have had ms for 35 yrs!!! back then doctors were reluctant to tell you what it was, so they convinced me my symptons were " all in my mind"! i guess its a worry because we all hear about the bad side of ms, and yes while there is a bad side to it, there are lots of people with ms living a fairly normal life. i am unable to work and i am restricted in every day things, but im still here it hasnt beaten me. :)
workinprogress
28-05-11, 18:44
I had many sypmtoms hun, numbness in fingers and toes, tingling, pins and needles, weekness in arms and leg, fatigue, hot patches, sensative patches, burning patches, eye issues, facial numbness, vibration in legs. Most have faded now, but weekness still comesa dn goes as do the numbness sensation. Mine started when i bent down to look at my son one night who ws really ill aqnd i had this electical crawling sensation that rushed from the outside of my face to the centre, really freaked me out so i stupidly googled and have had every other symptom since.
I currently keep messing my words up but i dont know if its coz im focused on it or im always preoccupied with other worrys
I have hadd and mri, evp, and seen 3 neros and all have said that i dont have ms!! if u read through my old post u will see how scared i was and how massive my sympoms were.....
Im sure u will b fine hun and im always here if u wanna chat xx
It is frightening how similar my symptoms are to yours Carli. And like you, I've been told umpteen times by my GP that its down to anxiety. But its so hard sometimes to train your brain to remember that the twitching, the muscle pain, the eye pain, the tiredness, the tingling, the numbness, the muscle weakness, the joint pain and every other symptom could be induced by the mind...but they are!!I've convinced myself I have everything from Lupus to MS to ALS to Parkinsons.And all that does is bring on even more symptoms! Crazy!
Its so nice to read other people's posts about their symptoms and to know that I'm not the only one out there with these irrational fears.
Take care all,
WiP
carteresque
05-07-17, 10:05
When I read these forums and see someone worrying about an illness, but then they never post again, I assume it's because they stopped worrying about it (but part of me wonders if it's because they turned out to have the illness after all and were unable to post again...).
So I thought I'd come back after my only previous post almost 7 years ago and say that despite my worries about MS, I am still fit and well, have another child, work full time and rarely worry about having MS any more.
Rarely of course doesn't mean 'never' so right now this thread was brought to mind by the fact that I've had the old muscle twitching since last night, stronger than usual, so I've been anxious about it. I'm slightly relieved by feeling it's almost certainly stress (very busy in work etc), and in fact by the fact that it came in within a day or so of me thinking earlier this week, "Oh, I haven't had any muscle twitching for a while - that's good!"
In the time since I last posted in 2010, I've worried on and off about MS from time to time - less so now than in the earlier years. Every time a year goes by without anything concrete, I feel relieved, but soon start worrying again if my vision seems odd or I'm unusually tired. I've managed to stop googling it most of the time, though I still get a visceral thrill when I see something about MS in the mainstream news (especially when it's some new promising treatment).
Amusing that I said above that when a year passed since my shoulder problem, I'd feel a lot more relaxed about not having MS. It's now been over 7 years and I still think "just one more year and I'll know I don't have it..." I suppose this is one of those promises made to be broken...
I am currently dealing with issues with this right now. I've had on and off tingling/prickling/burning for over a month in my left hand and foot. Interestingly enough this past week has been pretty mild in terms of the tingling but I'm now instead feeling dizzy/lightheaded, specifically in my forehead. This has been going on for a little over a week maybe? I've also had unusual temple pressure in my left temple for the better part of 2 months as well that comes and goes.
Of course I googled, of course MS came up, and I listened to people on youtube describe their first symptoms, visited the MS subreddit, and still continue to worry that this is what I have. I definitely have HA if nothing else as these thoughts have dominated my mind for some time.
I've had an extremely stressful year (more stressful than at any other time in my life) and I'm pretty sure this is what has caused me to fall off the horse so to speak but man the symptoms just seem so real.
What really sends me into a tizzy is when I'm just with my girlfriend, totally relaxed, and a symptom will hit me out of the blue. My foot will start burning, or i'll get dizzy, or my temple will throb. I know anxiety symptoms can hit even when you're not anxious but it scares the shit out of me regardless...
Hopefully this will all pass, the more I chalk it up to anxiety and letting my body just do its thing, the better I ultimately feel.
Good luck to anybody out there suffering with this BS. I know your struggle.
I hope I don't have MS as MS is one of my fears as well. I have this symptom where I would have my eyes closed while trying to sleep and if someone makes a loud sound such as opening a door, I see a white flash in portions of my vision along with the sound; I heard this was a symptom of MS. Anyone have this symptom without MS? Thanks
^Oh yeah, that happens to me too. Not sure why it happens but it's normal and nothing to worry about. It's not MS.
I hope I don't have MS as MS is one of my fears as well. I have this symptom where I would have my eyes closed while trying to sleep and if someone makes a loud sound such as opening a door, I see a white flash in portions of my vision along with the sound; I heard this was a symptom of MS. Anyone have this symptom without MS? Thanks
This is due to hypersensitivity of nervous system. Many people with anxiety disorders/panic experience this and other symptoms which can mimic those of more serious illnesses like MS.
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