Oh no, new obsession, convinced I'm terminally ill

[GirlAfraid23]

The new obsession/fixation is MND/ALS.

I really need some help with this. It started with a twitch/fasculation in my foot, my toes moving involuntarily when at rest. I'll add that my feet get freezing cold at rest and sometimes turn purple. It's always been that way but seems more than ever lately.
I then did what I know I shouldn't and looked it up on google.
Yep, you guessed it, ALS, MND and MS were the main causes for these symptoms.
Focusing on the worst case scenario as usual, I homed in on MND...since a few days ago I have read more about this disease than I can remember in a long time.

I'm constantly searching the ALS (American) forum and keep breaking down in tears at the stories of people on there. I'm also crying because I'm terrified, I'm only 27 and I don't want to end up losing all muscle use and in a wheelchair, being unable to speak.
My entire body is now twitching - my arms, calves, tongue, hand, feet, chest, abdomen, neck, face, fingers, bum! You name it, it's twitching. Also my calf keeps feeling dead (like its gone to sleep) and my foot keeps getting pins and needles, I also get a buzzing feeling in my feet.
My neck feels sore and cramped like its hard to hold up.

I have done strength tests - hopping around on one leg, walking on my heels and toes. Walking heel to toe, opening jars with my left and right hand, turning keys with both, testing my strength by pushing back on my partner's legs with mine and hands/arms too. I've even had a go at lifting his weights.
Oh and the crazy one today, I hopped upstairs on one leg! I'm going to hurt myself soon.
I'm convinced my hands feel stiff, I keep tripping and scuffing my feet as I walk, I am dropping things and my hands don't feel as good at fine motor skills as they once were, almost clumsy.
I asked my partner (who is losing patience with me) to do the babinski reflex on my foot and the hoffman's sign on my hand, both came back negative but I'm still not convinced. I keep having visions of myself in a wheelchair, being cared for by my partner or parents, unable to walk or talk. Using eye control as my only communication, you can see I've done the research!
Now I've learnt a small number of cases are respiratory onset and that sent me over the edge as I've been having trouble with my breathing the last week or more.

Please someone help, I haven't had an episode this bad in a few years. I'm ready to take myself to A&E and ask for psychological help. I'm not eating or sleeping properly. It's all consuming as ever.

[Holds1325]

Hi there,

Sorry you are suffering from health anxiety but it'll be okay!

Your situation sounds similar to mine except I had a different illness in mind although ALS and parkinsons disease were another fear I had.

I was so scared of having colon cancer, and like you I had read all the symptoms, read stories of people my age getting it and what happened to them and how some people died from it or were miserable for life etc. I was soooo convinced that I had it that I could not stop obsessing over my symptoms.

The way I got over it was to stop looking that stuff up, stop googling it, change my mind elsewhere. Of course I had several doctor visits, I even had one doctor convinced I had it and he scheduled a colonoscopy for me. However, my referral got denied because I had no immediate symptoms and the report stated that I need to not waste time taking up spots for people that actually need this test done as the waiting list is very long.

I took that as a sign perhaps that I need to stop obsessing over it. Did I stop? not really but I worked on ignoring the urge to google/go to the doctor etc. for weeks. Eventually my symptoms went away and I am completely fine a year later.

What happens very frequently with HA sufferers like myself is that the particular fear manifest symptoms on its own. I had no idea of this and was sure that it was something wrong. Once I put my effort towards treating my anxiety rather than what I thought I had, the symptoms slowly faded.

Hope this helps :)

[Mercime]

The new obsession/fixation is MND/ALS.

I really need some help with this. It started with a twitch/fasculation in my foot, my toes moving involuntarily when at rest. I'll add that my feet get freezing cold at rest and sometimes turn purple. It's always been that way but seems more than ever lately.
I then did what I know I shouldn't and looked it up on google.
Yep, you guessed it, ALS, MND and MS were the main causes for these symptoms.
Focusing on the worst case scenario as usual, I homed in on MND...since a few days ago I have read more about this disease than I can remember in a long time.

I'm constantly searching the ALS (American) forum and keep breaking down in tears at the stories of people on there. I'm also crying because I'm terrified, I'm only 27 and I don't want to end up losing all muscle use and in a wheelchair, being unable to speak.
My entire body is now twitching - my arms, calves, tongue, hand, feet, chest, abdomen, neck, face, fingers, bum! You name it, it's twitching. Also my calf keeps feeling dead (like its gone to sleep) and my foot keeps getting pins and needles, I also get a buzzing feeling in my feet.
My neck feels sore and cramped like its hard to hold up.

I have done strength tests - hopping around on one leg, walking on my heels and toes. Walking heel to toe, opening jars with my left and right hand, turning keys with both, testing my strength by pushing back on my partner's legs with mine and hands/arms too. I've even had a go at lifting his weights.
Oh and the crazy one today, I hopped upstairs on one leg! I'm going to hurt myself soon.
I'm convinced my hands feel stiff, I keep tripping and scuffing my feet as I walk, I am dropping things and my hands don't feel as good at fine motor skills as they once were, almost clumsy.
I asked my partner (who is losing patience with me) to do the babinski reflex on my foot and the hoffman's sign on my hand, both came back negative but I'm still not convinced. I keep having visions of myself in a wheelchair, being cared for by my partner or parents, unable to walk or talk. Using eye control as my only communication, you can see I've done the research!
Now I've learnt a small number of cases are respiratory onset and that sent me over the edge as I've been having trouble with my breathing the last week or more.

Please someone help, I haven't had an episode this bad in a few years. I'm ready to take myself to A&E and ask for psychological help. I'm not eating or sleeping properly. It's all consuming as ever.

Please, make an appt with your GP. I am sure that you don't have what you fear, and asking your bf to do all these tests is just daft - but I think you know that really. Go and discuss your fear with your doc, and think about getting help with your HA. And lastly, please stay away from the ALS forums. I really hope you aren't posting on those forums, they are dealing with awful physical illness, and that needs to be respected.

Get the right help at this difficult time, we will support you to get through this bad period of HA.

[Beckybecks]

I can't tell you how many terminal illnesses I've had just this year alone. Like you I research each disease as though Im doing a doctorate on the subject. I'm almost a professional on the subject of brain tumors, colon cancer, breast cancer, AIDS, mental illness etc etc..... I see myself having a stroke and being unable to move from the floor to get help or phoning an ambulance while I suffer a heart attack.

HA can be a nightmare when we allow it to get out of control.

You've read up on the symptoms and your mind is now allowing you to experience them.

If you find you're unable to rationalize with yourself, go to see a Doctor for reassurance and also,explain about your anxiety so you can be prescribed something to help you get over this episode.

[cosmetic queen]

I know how you are feeling, a few weeks ago i was having twitches in my hand and was convinced it was MND.

They have since stopped but i found the more i worried the worse they became.

I have an obsession with sudden death at the moment but i have diagnosed myself with various illnesses over the last year which seem to go from one thing to another. :unsure:

[GirlAfraid23]

Thanks for the replies everyone.

It's really awful isn't it?! I don't think I'll be able to sleep tonight.
I'm struggling to breathe and take a deep breath. I'm really worried about respiratory onset ALS, I'm twitching all over and it's terrifying. Another sleepless night :weep:

[Colicab85]

It doesn't sound like to have motor neurone at all. I go through this a bit. I'm currently in the process of losing a close friend to it and it's awful and it's what triggered me on this whole anxiety trip.

What it has given me though is an insight on how it starts and what it looks like and what you're describing is not usual at all.

Btw. Excellent choice of username and sig. The Smiths are one of my all time favourite bands. Ask from Louder than Bombs is a particular favourite.

[GirlAfraid23]

It doesn't sound like to have motor neurone at all. I go through this a bit. I'm currently in the process of losing a close friend to it and it's awful and it's what triggered me on this whole anxiety trip.

What it has given me though is an insight on how it starts and what it looks like and what you're describing is not usual at all.

Btw. Excellent choice of username and sig. The Smiths are one of my all time favourite bands. Ask from Louder than Bombs is a particular favourite.

Thank you for this reply. I'm so sorry about your friend. I hope he/she is comfortable.
I can't imagine what you're going through but I can see why you'd be worried for yourself if you see it first hand.

Do you mind me asking why my symptoms don't sound typical? You don't have to answer if you don't want to.

Yes I love The Smiths & Morrissey. Seen him twice at gigs and he's amazing x

[Colicab85]

Erm. The sensory feelings, motor neurone, is not a disease of the senses. From what I know, you can feel everything, you just can't use it.

So you're numbness and pins and needles etc is not typical.

Also the multi site twitches, I gather twitching nearly always comes AFTER obvious weakness and it's generally specific to one location.

I'm pretty sure you'll know this if you've done as much research as you say, the trick is believing it. Easier said than done I know but you really have to, you are not going to be that one case that gets twitching all over before weakness, and at your age. The odds of that would be something incredible like 1 in 20 million or something.

[MyNameIsTerry]

I have done strength tests - hopping around on one leg, walking on my heels and toes. Walking heel to toe, opening jars with my left and right hand, turning keys with both, testing my strength by pushing back on my partner's legs with mine and hands/arms too. I've even had a go at lifting his weights.
Oh and the crazy one today, I hopped upstairs on one leg! I'm going to hurt myself soon.
I'm convinced my hands feel stiff, I keep tripping and scuffing my feet as I walk, I am dropping things and my hands don't feel as good at fine motor skills as they once were, almost clumsy.
I asked my partner (who is losing patience with me) to do the babinski reflex on my foot and the hoffman's sign on my hand, both came back negative but

Every one of those is a engaging with the obsession. They may even be compulsions. These will keep an OCD sufferer trapped in the cycle.

So, please try to eliminate tests such as this. If there is one thing we always need to remember, it's that the ONLY people able to perform tests are those trained. We can try but we will make mistakes. We won't even realise it. We then jump to conclusions and the bias continues.

All those twitches are known anxiety symptoms. Breathing trouble can easily be anxiety from muscular tension. Cold extremities can be many innocent things. Toes moving without you trying to - a well known anxiety symptom called hypnic jerks. Weird buzzing in your body, a well known one seen in anxiety (I've been having it for about 10 years now) called a paraesthesia (and before you think that sounds scary, it's a group that contains pins & needles!). Dead legs happen too, stiff calves are something I had for years with my symptoms but they have long gone now.

I would say that seeing a GP about the purple of your toes/feet but this could just be a harmless circulation thing. Like you said, you've had it a long time.

[andysa]

So here is the absolute truth on the matter:

1. The incidence rate of MND/ALS is around 2/100,000 people,
2. the chances of getting MND/ALS at your age and being female and not having at least two direct family meember with ALS/MND is 1/ 165,000,000
3. Twitching while present in MND/ALS is seldom or ever the first sign of the disease, the classic symptoms of ALS/mnd are Clinical weakness, Hyperreflxia, muscle atrophy and in very rare cases slurring speech
4. typical age of onset increases from the age of 40 until it hits its peak in the 70's with the average age at onset being 59.
5. it is more common in men than women

This is an extremely rare disease and under the age of 30 it is almost unheard of. There is absolutely no chance that you have this however there is a condition called benign Fasicuclation Syndrome which effects people with body wide twitching. it is benign if not bloody irritating and seems to occur in people with anxiety like you and me --- been twitching for three months straight

[Captain irrational]

Oh and the crazy one today, I hopped upstairs on one leg!

There is definitely nothing physically wrong with you then. Infact you are probably much fitter than average if you can hop upstairs on one leg.

I actually know a woman who suffers from a mystery neurological disorder which mildly affects movement in one of her legs (thankfully it is not thought to be ALS/MND as it has not progressed to anywhere else in her body). She would not even be able stand on that one leg, let alone hop up a flight of stairs.

[GirlAfraid23]

Thanks for everyone's replies.

I'm still terrified and I'm so fed up with this :( I wish I'd never googled!

Can I ask people's opinions? How likely is it that I have respiratory onset ALS? It's a very rare onset and usually happens in men but that's doesn't mean I'm exempt.
I feel as though my diaphragm is weak and in using my shoulders and other muscles to breathe. Especially as I woke in the night gasping for air and my heart racing.

I'm still twitching!

[Colicab85]

I gather respiratory onset takes up less than 5% of all MND cases so taking in to account the massive odds of you getting the most common form of MND in addition to the odds of you getting the rarest, you are probably looking at something like 1 in 500 million or something.

Its very unlikely, all those symptoms you have mentioned are common in Anxiety. I have also had them all at one point or another over the last 4 months.

Also, you have been a member of this forum for 7 years. How many times were you certain you had one of the previous diseases and none of them have been true. Apply that logic to this "blip".

[GirlAfraid23]

The twitching persists. I've also now noticed my left the at muscle on my hand looks slightly smaller and less meaty than the right. There's also a visible tendon sticking out which I assume means there isn't enough muscle there.

My neck has been very heavy today and I keep dropping things. Plus tripping up on the flat!

I held my phone to my ear for about 5 minutes today and my muscle was aching like I'd overused it at the gym or something...that's not normal right?

Also I was holding a plastic carrier bag on my forearm today and when I took it off (it was painful) I had a horrific cramp and could barely move it for pain. What's going on? I'm scared it's the thing I dread the most...

[KeeKee]

My right leg is visibly bigger than the left. My calf especially. My GP told me it's because I use my right side more. Could that be the case with your hand?

Also my muscles all ache like crazy very easily. When i write a letter my wrist kills within minutes, i can no longer use mouthwash as my jaw kills within seconds.my calves kill whenever I walk faster than normal paced. I honestly don't know what it is but it's nothing to worry about. Just an annoyance.

[GirlAfraid23]

Thanks for the reply but that coupled with the twitching can't be good can it?

[KeeKee]

Well I've had twitching for years and nothing has come of it. I think twitching is very, very common with stress and anxiety.

[GirlAfraid23]

I wish I could stop this. I'm going to a therapist tomorrow. I don't know what to do. I'm convinced I'm dying. I might as well not bother anymore. I'm thinking about ending it with my boyfriend as I can't see my future progressing. I'm constantly contemplating my death.

---------- Post added at 21:26 ---------- Previous post was at 19:27 ----------

Please someone help. I'm at the lowest of the low tonight.

[andysa]

You are completely fine, nothing you have described sound anything like ALS/MND. Everybody twitches some just more than others all for different reasons, what to know the number one cause of twitching? Its anxiety.

Also with ALS it starts in one place and moves unrelenting from that place it doesn't effect everything at the same time in the beginning so take a big cup of chill out and relax. You don't have ALS you are to young and nothing which is happening to you is related to ALS. if anything you have benign fasciculation syndrome look it up you have all the symptoms for this

[GirlAfraid23]

Thank you for replying.

This is such a hard one to break. Don't think I've ever had such an awful bout of HA over such a short space of time.
I don't want to carry on like this. Constant twitches in my legs. Mainly just my legs now which makes me nervous aa I know if it happens in an isolated place then that's bad.
I try not to think about them but how on earth can you ignore constant twitches/irritation and cramping in your body.

My left hand still feels weak.
Luckily it looks like I've been banned from the ALS forum. I'm completely obsessed though and demonstrating compulsive behaviours in other ways like the MND facebook page - read a story about a woman of 30 (three years my senior) who is living her life with this dreadful disease, unable to speak, eat or move. Another story of a mother who lost her daughter to it and she was 30 😔

Why do I do this to myself? The images in my head are horrific, my partner caring for me, unable to eat, breathe or speak. I desperately want children and I'm starting a new job in September...I feel awful.

[Colicab85]

Thank you for replying.

This is such a hard one to break. Don't think I've ever had such an awful bout of HA over such a short space of time.
I don't want to carry on like this. Constant twitches in my legs. Mainly just my legs now which makes me nervous aa I know if it happens in an isolated place then that's bad.
I try not to think about them but how on earth can you ignore constant twitches/irritation and cramping in your body.

My left hand still feels weak.
Luckily it looks like I've been banned from the ALS forum. I'm completely obsessed though and demonstrating compulsive behaviours in other ways like the MND facebook page - read a story about a woman of 30 (three years my senior) who is living her life with this dreadful disease, unable to speak, eat or move. Another story of a mother who lost her daughter to it and she was 30 😔

Why do I do this to myself? The images in my head are horrific, my partner caring for me, unable to eat, breathe or speak. I desperately want children and I'm starting a new job in September...I feel awful.

It's can be seen to be bad if it appears in one muscle....as in your left calf, not both calfs.

And bare in mind that it nearly always (98%) of the time appears AFTER significant atrophy and weakness. As in you would notice that your legs didnt work anymore in combination with the twitching.

[Fishmanpa]

Luckily it looks like I've been banned from the ALS forum.

They don't tolerate HA sufferers well on the ALS forums. Same thing on the cancer forums I was part of. It was an HA sufferer that led me here!

The ALS rabbit hole is one of the worst I've seen on the forums. Some, like yourself are in so deep that they've been repeatedly banned from the ALS forums. Please, please, do not go on the forums. It's truly disrespectful to those who are suffering.

We can tell you that you don't have this illness (and you don't!) till the cows come home but it's up to you to believe it. Everyone is throwing you a rope... are you going to grab it and pull yourself out of the hole?

Positive thoughts

[Mercime]

I can only echo the words of FishmanPA, regarding the ALS forums. Not only is it disrespectful, it is truly distressing to those who are fighting to stay alive.

They have enough to cope with. I can see how distressed you are, and I empathise, I truly do. But I feel I have to add this. HA, like all types of anxiety disorder, can make the sufferer selfish, and inconsiderate to the needs of others, who may be fighting their own battles, whether physical, or psychological. l can't pass judgement, I am a sufferer myself. But your words stand out to me, "luckily it looks like I've been banned from the ALS forums".

Luckily for you, but have you tried to think at all at how your posts may have affected them? There has obviously been a lot of upset caused. I'm not trying to guilt trip you, but to see the reality of your actions, and to think of others. That can often help those who are in the grip of anxiety, to try and guide others, giving advice of you can.

I think I read somewhere that you are due to see your therapist soon. Please do that, instead of posting in places that you have no cause to be in. You don't have ALS, and unless you decide that you want to try and consider the possibility that your thinking is irrational, you won't be able to help yourself get better.

It is down to you, to make moves, read the right things, get the right information - nobody can do that for you. It has to be you that makes the move - I'm sure you can.:hugs:

[GirlAfraid23]

Continued thanks for these replies.

You're all talking sense but the hardest thing is to believe it myself...

I know I shouldn't have posted on the ALS forum but it was only one post and so I'm not sure why I got banned, maybe I had viewed too many threads. I do feel selfish and especially when I ask my partner to do tests on me and go on and on about it.
It's a horrible, all consuming condition.
But I keep thinking (between moments of clarity) why wouldn't I have an illness like MND or MS? (at this point I'd rather have MS out of the two!) just because I have health anxiety doesn't mean I have an invisible force field around me. (I wish it did!)
My breathing is so erratic...I hope it's the anxiety.

Also my toes won't stop moving on their own, so annoying (more than anything)

[ServerError]

The thing about ALS/MND is that it is such a terrifying condition featuring some of the scariest possible human experiences - essentially being trapped inside a body that doesn't work. It's a rabbit hole into which I stared briefly before pulling back from. I regularly give to a variety of charities, but I'm ashamed to say that on one occasion, I was approached by an MND charity and I just walked on by, so reluctant was I to even think about this disease. It's about as cruel a condition as you can get. If god exists (and I happen to think he probably doesn't), he has a lot to answer for with this one.

Fortunately, very few people actually get it. The grisly nature of the disease means it looms larger in the psyche of the health anxious person than it need do. The likelihood of getting it is extremely low. I myself worried about sporadic fatal insomnia for a bit, a disease so rare it barely exists.

What I think you're really doing here is freaking out about this horrible disease. You want to be told you won't get it because it scares you so much. Deep down, I suspect you know you don't have it, but the prospect is so frightening you can't stop thinking about it. In much the same way as a knife-wielding maniac breaking into your home and saying he doesn't intend to hurt you doesn't make you feel any better, being told you are very unlikely to get this illness doesn't make you feel better while you're preoccupied by it.

As for the twitching, as my anxiety got worse, I went through all sorts of symptoms. Then, one day, I noticed my body twitching. My immediate response was "oh god, what now?". I spent the next few hours feeling worse and worse, wondering what disease this twitching was indicative of. But I also knew, logically, that anxiety can cause it. Then, out of the blue, I just said "so what?". I just let myself twitch, and the next thing I knew, I was asleep!

The twitching hasn't gone away. It seems to be benign - well, it's certainly nothing progressive! I'm fine. Twitching is a very common thing for a body to do. You need to find a way to tackle the thought patterns that are worsening your response to it and making you feel so terrible.

[Captain irrational]

Continued thanks for these replies.

You're all talking sense but the hardest thing is to believe it myself...

I know I shouldn't have posted on the ALS forum but it was only one post and so I'm not sure why I got banned, maybe I had viewed too many threads. I do feel selfish and especially when I ask my partner to do tests on me and go on and on about it.
It's a horrible, all consuming condition.
But I keep thinking (between moments of clarity) why wouldn't I have an illness like MND or MS? (at this point I'd rather have MS out of the two!) just because I have health anxiety doesn't mean I have an invisible force field around me. (I wish it did!)
My breathing is so erratic...I hope it's the anxiety.

Also my toes won't stop moving on their own, so annoying (more than anything)

I recommend you have a look at this forum. http://www.aboutbfs.com/forums/ There are some very knowledgable people on there who will be able to explain everything you are experiencing better than most of us here can.

And make it a personal mission of yours to stay away from any ALS/MND or MS related websites. Browsing and posting on those websites only upsets you even further and it annoys the poor souls who are actually suffering with these illnesses. It achieves nothing good whatsoever, so stay away from them.

[conan]

drinking game, do a shot every time one of these threads appear (i posted my inaugural one a couple of months back, strikes me as a bit of a rite of passage around these parts)

---------- Post added at 09:09 ---------- Previous post was at 09:05 ----------

sorry i don't mean to trivialise it. i have had every one of these symptoms and fears within the last six months. i even decided on the way in to work today that one of my feet was feeling weak again.

the problem with ALS and MS and a handful of other forum favourites is that not only does anxiety mimic their symptoms, but they can be difficult symptoms to evaluate objectively, which leaves the door open, so to speak. but yeah, three months ago i was hopping up and down in the toilet cubicle at work and repeatedly touching my nose with my eyes closed, because i had weakness, numbness, twitching, dizziness, etc. etc. i'm physically totally fine and so are you. hang in there. :)

[emmegee]

Continued thanks for these replies.

You're all talking sense but the hardest thing is to believe it myself...

I know I shouldn't have posted on the ALS forum but it was only one post and so I'm not sure why I got banned, maybe I had viewed too many threads.

You probably were not banned, but rather used up your visits without registering. They only let you view like 20 times before prompting you to register.[COLOR="blue"]

---------- Post added at 15:37 ---------- Previous post was at 15:35 ----------




What I think you're really doing here is freaking out about this horrible disease. You want to be told you won't get it because it scares you so much. Deep down, I suspect you know you don't have it, but the prospect is so frightening you can't stop thinking about it. In much the same way as a knife-wielding maniac breaking into your home and saying he doesn't intend to hurt you doesn't make you feel any better, being told you are very unlikely to get this illness doesn't make you feel better while you're preoccupied by it.



Hit the nail on the head. Great Analogy.

[lily1]

I feel for you, I had this obsession 5 years ago and I too hopped up the stairs! etc. It was awful. I've been for the last 4 years obsessively checking for Breast C and have had many tests.
It's never ending..,
Why can't we just live our lives.

Please don't google it makes it a lot worse xx