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popejoan
21-01-15, 19:03
Can't believe I jumped to another fear in a week.

Feel like my muscles are so weak. Especially my right hand and leg. The other day I tripped for no reason and felt like I had to drag my leg. My right hand feels so clumsy. I feel like I'm at very beginning stages of Als.

I'm tired all the time, tonight I slept for 10 hours, I'm shaky all the time and my arms are so weak, they are weaker than my legs and my right hand is so weak. I feel like my reflexes are so clumsy, I aim somewhere and my arm goes somewhere else.

I also have low creatinine levels in my blood so I think my muscles are wasting and feel like I have muscle atrophy in my hands. My neck is soo stiff as well sometimes I can't even move it.

I also have muscle twitches and a lumpy throat feeling. I saw my GP and he gave me a neuro exam and he said he thinks I'm alright but I insisted on seeing a neurologist. He told me to get a second opinion from another Gp and said to keep a symptom diary and see him again at the end of Feb.

I had an Mri a month ago and it was clear but I didn't know it doesn't show Als. I feel like now that everything else is ruled out with MRI it must be Als and I'm soo scared. It's worse than cancer fears.

Anyone with muscle weakness? Any help is appreciated, I feel like I can't take this anymore, I'm soo scared.

wnsos
21-01-15, 20:23
Lots of people have it, also the way you're writing makes it clear you do know anxiety is at the root of it. Focus on beating it. You can do it. :) If it helps any, the ALS ice bucket thing was going on in the midst of my massive bout of HA and as soon as I started reading, my muscles felt weaker and weaker. From what I understand with ALS you don't get gradual weakening, it just stops working.

robin321
21-01-15, 20:52
Hi Popejoan,

I was following your posts around xmas about your stools, colonoscopy, etc..
My wife also has low ferritin and I related to your posts and was happy you got tested and were ok.

Since then I have seen you fear lymphoma, and now ALS...
It is pretty obvious you have underlying anxiety that you are placing on whatever symptoms you perceive.

The more you focus, the more you will notice. That is life... but it doesn't mean anything is wrong. You really need to take this as a wake up call and focus on your mental health.

And I mean that in the most helpful way possible. You seem great and I don't like to see you suffer.

popejoan
21-01-15, 23:39
Hi wnsos, thank you for your answer. When the ice bucket challenge was going on I had no HA so I was ok then, it started just suddenly. I googled and read a lot I can't seem to stop this urge, I read someone woth als saying that it started as perceived weakness for them and gradually clinical weakness happened. I don't know I freaks me out a lot. Can't stop cheking my hand muscles and my tongue and each time it feels like muscles getting smaller. This is so scary.

---------- Post added at 22:39 ---------- Previous post was at 22:36 ----------

Hi Robin 321. Thank you so much for your reply. It really made me tearful. You are right I have a problem and although I'm seeing a therapist and doing whatever I think is best nothing is working. I'm going through a very stressful time and I'm also very lonely in this.
I feel the same for you, I hope your wife is doing fine and you are feeling much better.

Serenity1990
22-01-15, 00:44
Sounds nothing whatsoever like ALS.

I appreciate what you're going through is tough, and it is real. However don't latch on to ALS as this is really nothing at all sinikar to what it looks like. ALS starts in one limb. By the time the twitches start (in that one limb) you would be seriously losing the ability to control the muscles in that limb, by which I mean one day you can pick up a kettle, the next day you can't and you never can again. This would be incredibly obvious to you but as much so to your doctor. Then it would move onto another limb months later, etc etc.

It does not cause a lumpy throat feeling. It causes inability to move the tongue. Which would at some point go through the same process as described above.

ALS is pretty much as bad as it gets when it comes to illnesses. The positive you should take from this is it's patently obvious to your doctor that something serious is wrong. No way in hell would you pass your GP's neuro exam with ALS.

popejoan
22-01-15, 01:02
Hi Serenity, thank you I really appreciate your answer.
Do you know anything about the very beginning of Als? Like does it cause a generalized weakness at first and clumsiness in limbs before you lose your ability to move them? I also feel like my hand muscles are wasting like the thumb muscles look smaller.
Also someone told me if they had low creatinine levels they would immediately demand to see a neurologist. Made me soo scared.
I'm sorry I'm asking too many questions, it's just I read your post on another thread about Ms and it was great so wanted to ask you these.

Serenity1990
22-01-15, 01:14
I know a lot less about ALS than MS tbh, I've never had the symptoms of it so I've never feared it.

Ironically I've had all the symptoms you have though!

However I do know that theres a lot of rubbish on the Internet about it though. I mean a LOT. I have BFS so I lurk on aboutbfs.com quite a bit, and there's literally thousands of threads on there from poor souls who have googled twitching and convinced themselves they have ALS. However the reality is ALS doesn't announce itself with twitching, and I understand it is completely incompatible with all-over twitching!

popejoan
22-01-15, 01:33
I understand, thank you so much. I decided not to google anymore because this is much worse than cancer fears. Even the name of it makes me feel dizzy. This is the worst fear I've experienced by far. Each time I stand up I feel like my legs are not gonna carry me, each time I can't open a jar or something I feel sick and whenever I have a twitch I feel butterflies in my stomach. Sooo so scared :(

popejoan
22-01-15, 14:39
Just realized I have tongue twitches as well. I can't feel them but I looked in the mirror and I have twitches when both my tongue lies at rest in my mouth and when I stick it out. Soo scared at the moment!

Serenity1990
22-01-15, 16:38
Why? You have twitchinf that is (a) widespread and (b) has not been preceded by clinical weakness.

Come on. If you're going to do this health anxiety thing at least do it properly and worry about something you vaguely have the symptoms of!

popejoan
22-01-15, 16:40
Just realized my tongue twitches, at the middle back while it's at rest in my mouth. Sorry I sound frustrating I know but it scared me so much. Tongue twitching shouldn't be a good sign?

Shouldn't have googled, I also have excessive yawning and didn't know it was another symptom...

wnsos
22-01-15, 18:32
My tongue has twitched loads, it's not ALS, I promise.

Also the more you read, the more symptoms you'll get and likewise, the more you yawn and realise you're yawning (or swallowing or coughing), the more you'll do it. :)

popejoan
22-01-15, 18:39
I was yawning excessively yesterday evening and only read it today that it's one of the symptoms :(

wnsos
22-01-15, 18:41
Everyone yawns every day. Sometimes more than other times. Yawning is...as natural as breathing. Don't let it worry you x

popejoan
22-01-15, 18:50
Thanks for your answer. You know how HA works, I'm totally freaking out at the moment.

wnsos
22-01-15, 19:28
I definitely do, it's the worst thing. Just don't read any more about ALS or I promise you, you'll get more convinced of it. Nix google altogether.

popejoan
22-01-15, 20:44
Will try to stay away from google but already accepted I have als :(

wnsos
22-01-15, 20:47
You don't.

Moscowolympics
22-01-15, 20:52
Hi popejoan

Like you, I've been going through a massive fear of THAT. This started at the end of July 2014. I started twitching, googled and then just collapsed with fear. I'm still recovering. It's been going on now for seven months. I've had twitching all over the place: tongue, knees, calves, arms, chest, eyes, the lot. During this past week I've been strength-testing my thumbs after going through a period of testing my ankles and legs. This was after I started getting pain in my left knee.

I know perfectly well that:

- The time this has gone on means it isn't THAT
- I can still do everything I've always been able to do with no difficulty; the only time any difficulty comes is when it's imposed by my mind as when I'm distracted and occupied any perceived weakness goes away
- The way my twitching moves around (sometimes two places twitch at once!) shows it isn't THAT
- I am now finally realising that twitching is my body's way of telling me I'm anxious
- The twitching is now beginning to subside: it isn't constant and is now beginning to lessen in severity.

However, this is rational me speaking. When I go back into old habits or negative thoughts, all that goes away. This happens every so often. I'm on medication and I'm going through counselling. A very tough 2014 brought this all on: my body just had enough of all the stresses life was throwing at it and, somehow, managing to absorb. However, it couldn't take any more.

All the physical symptoms I - you - have, coupled with the mental ones (very important the latter...) shows we don't have what we fear. The patterns, the thought-processes, the other medical fears we've had. It shows it isn't what we fear. The problem is telling our brains this.

My brain is broken. Well, not broken, but it isn't very well. Therefore, it needs the counselling, medication and in my view the time to mend itself. It's torture at times. But we will get there.

popejoan
22-01-15, 21:12
Hi Moscowolympics,

Thank you for your message. Have you really had tongue twitching? I looked in the mirror when my tongue is inside my mouth at rest, I saw twitches and some bumps as well, like my muscle is wasting.

Did you have weakness, clumsiness, shakiness or stiffness and did you have any excessive yawning?

I too have difficulty saying it out loud or writing it down. I hope we will get there, although I'm pretty much convinced now :(

Moscowolympics
22-01-15, 21:31
Yes, all of that! I went through a period with my mouth where I thought my tongue was too big for my mouth and that I was losing strength there. I would do silly tongue testing exercises. I also went through a period where I thought I was slurring my speech and couldn't swallow. That's all subsided now, thankfully...

---------- Post added at 20:31 ---------- Previous post was at 20:28 ----------

Don't forgot, the tongue is a muscle. If your body is hyper-stimulated, it will twitch. That's especially the tongue as well; it's very sensitive and because it's largely free and flexible, it will twitch. If you're sticking your tongue out regularly, it's probably fatigued as well. Honestly, this is exactly what I used to do.

popejoan
22-01-15, 22:14
Well I just realized tongue twitches today, I unfortunately read that tongue twitching while at rest in mouth is bad and unfortunately I also read that excessive yawning is a symptom so just convinced myself I have it. I'm glad you're feeling better now, I wish I could feel better as well. Have you see your Gp or a neurologist? I think I will see a neurologist back in my country, I will visit my family at the end of Feb and ask for an Emg test.

Moscowolympics
22-01-15, 23:03
All I've done is see my doctor, explain the muscle twitching and that's it. He didn't say anything or seem concerned. This, coupled with all the things I've read re: twitching and anxiety, mean we shouldn't be worrying. I discovered my tongue twitching after reading about the symptom and went into a panic, which brought all those other symptoms I've mentioned such as thinking I was slurring my speech.

Go on the Anxiety Centre website and look at the symptoms. Better yet, join for a month (cost about £5) and listen to the Skype archive calls that focus specifically on muscle twitching. I could do with listening to them again myself!

popejoan
22-01-15, 23:22
Thank you, really, of course you know HA mind doesn't believe it's now what it think it is but at least there are others. I feel like it's only at the very beginning of it and that's why symptoms are vague and actual weakness is about to start. Also, does anxiety cause twitching all over, tongue twitching and excrssive yawning really? I have trouble believing that.

Moscowolympics
22-01-15, 23:35
Yes! Yawning can be caused by not getting enough oxygen into the body (hyperventilating), while the tongue is a muscle and is particularly sensitive. Also, twitching tends to start once the weakness has fully kicked in, not before. You'd know about it, that's for sure. The twitching tends to be focussed on one area as well, not all over. For example, one minute I can have a twitch in my knee, then one on my left buttock and then in my chest! That isn't symptomatic of you know what.

Look here: http://www.anxietycentre.com/anxiety-symptoms.shtml

Honestly, this site and Anxiety Centre have been such a pillar of support for me over the last few months.

popejoan
22-01-15, 23:40
Thank you Moscowolympics for being patient with me. I've had numbers of cancer fears before but none of them was this scary, so I'm being even more freaked out and annoying and seeking for reassurence more than ever. Sometimes I think I'm losing my mind, yesterday I was obssessed with my hand muscles and convinced I have muscle atrophy there and today my tongue and yawning. Now I even think that the lumpy feeling in throat, my very tense and panful neck and shortness of breath are all symptoms as well. I have more twitches today, mostly on thighs. I still don't believe anxiety can cause twitches. I will look at the website thank you.

Moscowolympics
22-01-15, 23:53
Honestly, I've been there (and still am to an extent). This week I've thought I was losing strength in my thumbs (I put it down to going to see a girl I really like for the whole of last weekend. While being wonderfully enjoyable, it somewhat stressed me out!). I've been picking mugs of tea up with my thumb and little finger and lifting chairs up with just a thumb. Barmy.

---------- Post added at 22:53 ---------- Previous post was at 22:52 ----------

And the lump feeling in your throat? Aka globus hystericus? Yep, had that too ;).

popejoan
23-01-15, 00:00
Wow I've been doing so many strength tests too. Today we had an asda delivery and as we live in an apartment and our buzzer to the main door doesn't work I had to go downstairs to open the door (we're on 2nd door). I told the delivery guy that I will carry them all upstairs myself and I did, therr were like 8 bags and I climbed the stairs in twos. I was shaking in the end though.
Trying pick up my super thick uni book with only thumbs and each finger. Hopping from one leg to other, hopping on toes, doind push up on only fingers. They all make me tired so much, but as I'm convinced I'm at the very beginning of the illness they don't reassure me.
my hands and feet are always cold too and now I link it to that too! :(

Moscowolympics
23-01-15, 00:10
Cold limbs aren't a symptom of that, while if you can do all those things with your fingers your haven't got weakness either. The onset tends to be extremely rapid. Also, if you're doing those strength tests, you will feel tired! You're exerting your body in ways you would have never dreamed of. All that extra energy to do those things, coupled with the anxiety, will tire you.

The cold limbs are to do with the blood being rushed to other parts of the body, such as your heart and other muscles. All to do with fight/flight. I used to have the cold feet and hands as well but that's all subsided now. Honestly, the amount of symptoms I've had on that list. Yet I still think I've got this at times...

popejoan
23-01-15, 00:34
I even did the babinski reflex test on mysef, over and over and over again with the tip of a key. I close the lids of jars, bottles etc.. to challenge myself next time I use them. So exhausting! Mentally and physically.
The only positive thing this fear taught me is that I don't care about small things anymore. I don't argue with anyone, don't get annoyed with anyone, just love and be nice to everyone. Life is short and there's no need for arguments and fights.
Thank you again, this is what I need right now. I will go and ask for an anti-anxiety medicine on Monday. I was always against them and have been using natural versions of them but they're not enough.
I'm experiencing severe derealisation and depersonalisation.

Moscowolympics
23-01-15, 11:06
Again, I've done all that. I've even sat on the edge of desks and tested my knee reflexes as well. I've done the jar thing, lifted kettles with just a thumb and index finger, poured pints of milk with just one finger. The stairs thing as well - going up them three or four at a time. Honestly, I've probably done all the strength tests you can think of now!

popejoan
23-01-15, 11:55
They're not reassuring though when you think it's normal I'm strong for now but it will get worse. I'm so tired and feeling so weak that I can only think it must be it.

doeeyedgirl84
01-02-15, 19:47
Hi popejoan

I am new here and I joined in because I read your post and since it is quite recent I just wanted to reply and share my experience with ALS fear. I am an hypochondriac. I have feared - in order of appearance - brain cancer, MS, ALS, bowel cancer, leukemia and now lymphoma. This is where I stand at this very moment. However, as I have been through the ALS fear I can provide some advice. This fear for me was back in June/July 2012. It started with me dropping something and fasciculations. I googled it and you pretty much know the rest. The fasciculations I had were all over my body, but mainly on my thighs and tongue. Yes I had tongue fasciculations and they used to be so bad that I could pull out my tongue in front of the mirror and see the tip of the tongue twitching non-stop for hours. I could even feel it when I wasn't talking. Reading online I found out that the electromyography was one of the diagnostic tests for ALS. I demanded one and it wasn't really fun. They stick huge needles inside your muscles and they make you contract them. Very painful, blood all over. Story short, the electromyography showed fibrillation potentials which is one of the emg findings in ALS. Since I already knew that I freaked out. I literally freaked out. The woman who did this emg recommended I would see a professor to take this fear away. She did, however, tell me that these potentials also appear due to anxiety or if you have protrusions in your spine. Hernias basically. I spent days and days locked in my room before starting my new job, cried, called everyone. Read thousands of postings online about ALS. They all said that a bad emg is usually something people with ALS have (and I did have bad results), continued with the fasciculations, freaked out again, etc. At that point I pretty much convinced myself I did have ALS. Then it was time for me to see this professor. He is an expert on ALS and saw many many cases. He didn't even bother reading the results of the emg. He did a neurological examination a full through examination and at the end of it he said "you don't have anything". I then told him about the emg. I was like "then why did she find these potentials?" he finally looked at the emg and asked "who did this?" as if it was even done incorrectly. Not surprised considering it was done by someone who looked like Jessica Rabbit. Anyway, he said to me the emg was useless as the first step in diagnosing ALS is a neurological examination. Like one of the guys said to you, there is no way you can pass a neurological exam with ALS. The emg is then use to pint point the problem that is eventually found in the examination. So to conclude I still have muscles twitches, they get really bad when I am anxious and even though I had - and occasionally still do - tongue twitches it was nothing. You should look up something called benign fasciculations syndrome cuz most likely that's what you have. This is what I have had for…3 years now. Like you, I used to test myself over and over…until the fear eventually subsided. I had the worse case scenario you can possibly have (fibrillation potentials ergo bad emg results) and still had nothing. So don't worry.

popejoan
02-02-15, 00:15
Hi doeeyedgirl,

I'm so sorry to hear that you have health anxiety as well and you went through ALS fears. So sorry the woman who did the emg scared you like that. I was thinking of getting an emg in Turkey when I visit my family at the end of Feb. Now I'm scared because if I get a result like that I don't think I can deal with it. I got a referral to neuro but I have to wait for ages to see one.
I mostly have weakness in arms and legs. Sometimes I can't make a fist with both hands. Today I had buzzing in my right foot and it freaked me out.
Thank you for sharing your story. I was doing better for few days until today but today I'm having the worst hangover ever and it made me start worrying again.

Fishmanpa
02-02-15, 01:04
I'm having the worst hangover ever and it made me start worrying again.

With all due respect PJoan, with the severity of your anxiety, the last thing you should be doing is drinking.

Positive thoughts

popejoan
02-02-15, 01:16
Hi Fishmanpa, I know, since my HA started for about 5 months I almost stopped drinking. I only drank a glass of wine on occasion, I don't know what happened to me last night.

I think I drank a lot because I was feeling slightly better and thought why not, I can drink tonight. Since I stopped drinking, the amount of alcohol I had yesterday really affected me badly today.

Never again. This hangover showed me that I'm nowhere near okay. I've had muscle weakness all day and buzzing in my right foot and I'm freaking out again.

popejoan
02-02-15, 16:23
My left index finger doesn't work. I can open doors with my right index finger but can't do with left.

I'm in a panic mode right now. I also have extreme tiredness, my limbs are jellies :'(

WeegieMac
02-03-15, 21:45
Joan,

Allow me to tell you my story. I too am terrified of THAT illness. I panic when it's mentioned on TV or film, for example the recent Stephen Hawking movie being mentioned at the Oscars or even last night when a random episode of "Suits" on Netflix was about a lawsuit surrounding THAT illness.

In early 2005 I began twitching. It began in my right thigh and this thing would twitch and leap around so violently that it was visible through my trouser material. Before long it was leaping around all over my body, and one Google search later I was convinced I was dying.

I went to my Docs and he was hardly helpful, in fact he made my anxiety worse ... ten fold. I then stumbled across the site AboutBFS and discovered Benign Fasiculation Syndrome. It's been ten years and I still twitch all over, sometimes in the same muscle for days on end, sometimes in more than one at the same time, sometimes tiny little twitches I can feel but can't see, sometimes big ones that you can see and feel.

I'm going through some anxiety regarding it just now because a month ago I went to a tribute match for one of my old Rangers FC heroes, Fernando Ricksen, who has this horrible illness. To see him struggle to walk onto the field, kick off, then sadly fall over as he tried to take a step backwards from the ball, was as heart breaking as it was terrifying.

Since that day I've had full blown anxiety about that illness. I've had a sharp pain in the right side of my neck as well as twitching in my neck and throat area and have had irrational thoughts that it's a symptom of IT. I can still eat and drink with no issues and the pain and twitches comes and goes. So it's not IT.

I've had long standing "issues" where the pinkie fingers on either hand have this odd "hinge" feeling at the main knuckle when bending my fingers to make a fist. It feels like that when bending the finger the knuckle bends to a point then pops over a bump and then my finger snaps down to form the fist. But I've had that for years and it comes and goes, so it's not THAT. I don't know what it is, but it comes and goes and has done for years.

I work with computers and use a mouse and keyboard 8 hours a day, 5 days a week, for 14 years. I then come home and use the computer, although for the last four years I've replaced a desktop for an iPad ... but I still type a lot on it. If my hands where doing that because of IT I wouldn't be able to touch type like I do.

I've noticed through silly self testing that my motor functions on my left hand are better than my right (I can twirl a pen between my fingers on my left hand far quicker than on my right, which is my dominant hand). But both remain strong, I can open jars, I can open bottles, I can open doors, I can button my shirt, I can tie my laces. So it's not THAT.

I've noticed that my Thenar muscle on my left hand is smaller than the one on my right, my dominant hand. Yet the thigh muscle in my left leg is slightly larger than the one on my right leg, my dominant leg. This has been the same for ten years, so it's not THAT.

Even now I've began doing push ups on my knuckles to test my strength (which may have been what popped a muscle in my neck that hurts only when I swallow from time to time) as well as sit ups, and squats.

I'm a member of Slimming World and have gone from 16.8 to 14.10 to 16.1 to 15.9 ... my weight can go up, that means I'm not wasting away.

Every now and then THAT illness comes to my mind and it freaks me out that I think any little odd thing going on is caused by it. Seeing Fernando Ricksen struck down before he's 40 fired off major health anxiety in me and I'm battling it right now, as much as I'm rationale to myself.



I'd recommend you download the Digipill app and buy one of the chill out tracks, lie in a dark room and unwind.

popejoan
02-03-15, 22:23
Hi WeegieMac, thanks so much for sharing your story. I can see you can't even type its name. I was like that too but now I can. I watched almost all youtube videos about that and watched amazing people having this disease and some of them dying. It is the most horrible disease ever.

I went to Turkey to visit my family last week and saw a neurologist there. I had a neck mri and than he did an emg on my hands, arms, legs and tongue. He said it's all normal but I can't let this go. I keep looking at the results he gave me and under something called "normal mup" my left hand and tongue is +3 and the rest are +4 so now I started thinking maybe it's a bad thing. Although the doctor told me that I definitely don't have this disease.

Once you go down that road it's very difficult to get over it. I feel better but I know whenever I drop something, whenever I realize my left hand is weaker or whenever I trip over something I will freak out and probably run to that doctor for more EMGs, although he told me he doesn't want to see me again :)

Google is guilty on this, because of google there are more people who are scared of this disease than those who are living with it. Scariest thing ever.

WeegieMac
02-03-15, 22:31
Hi WeegieMac, thanks so much for sharing your story. I can see you can't even type its name. I was like that too but now I can. I watched almost all youtube videos about that and watched amazing people having this disease and some of them dying. It is the most horrible disease ever.

I went to Turkey to visit my family last week and saw a neurologist there. I had a neck mri and than he did an emg on my hands, arms, legs and tongue. He said it's all normal but I can't let this go. I keep looking at the results he gave me and under something called "normal mup" my left hand and tongue is +3 and the rest are +4 so now I started thinking maybe it's a bad thing. Although the doctor told me that I definitely don't have this disease.

Once you go down that road it's very difficult to get over it. I feel better but I know whenever I drop something, whenever I realize my left hand is weaker or whenever I trip over something I will freak out and probably run to that doctor for more EMGs, although he told me he doesn't want to see me again :)

Google is guilty on this, because of google there are more people who are scared of this disease than those who are living with it. Scariest thing ever.

You're more than welcome, Joan.

I've even had the "experience" of walking through the super market doing my shopping and one of my knees just buckles, not enough to take me down but enough to make me catch my step. This last happened a few months ago and I still play 5 a sides as a goalkeeper every week and make fantastic diving saves to help my team.

The only medical tests I've had done is a CT scan of my brain when I had some inter cranial pressure, which turned out to be due to high blood pressure which I am now controlling via medication, but I'd like to think anything relating to IT would have perhaps shown back then at the height of my twitching, although I'm not sure if CT can see signs of that.

My anxiety over this illness, in fact my entire health anxiety in general began the day I started twitching. I think tonight I'll take my own advice and go listen to Digipill and just unwind.

popejoan
02-03-15, 23:22
WeegieMac, you are not alone. I twitch all over as well, but my doctor said the twitching would be constant because I didn't twitch during the medical exam and emg. He didn't give me a thorough exam which made me concerned as I thought he would test my strength. He just tested my reflexes and strength in my hands. It doesn't matter how many tests we have, we have HA and it won't let us to relax but this disease is the worst, I can't see myself stop thinking about it.

Tinker28
03-03-15, 07:50
I have to tell you, I have had your exact fear, last year and it's very hard to get over that one and over time the more u think about it the more your body will show you signs of having it. My body was convincing me that without a doubt I had ALS, even though doctors we're saying no I didn't but the more I focused on it the worse I got. I don't fear this one anymore. I'm on to a new fear now. I really hate HA. I know it's hard but listen to us it's a very uncommon dieases and your mind is working to hard to catch up with your thoughts and is making to have all kind of symptoms that is giving you the assumption that u do have it when you don't. I know been down that same path. I to thought this is scarier then cancer. Now I'm back to cancer fears "again" I hope your doing better.

popejoan
03-03-15, 11:32
HI Tinker28, thank you for your message and I'm glad you're over this fear. I don't know how to. I'm hopeless on this one as I have no control over this. There's no way to prevent this, you can't just stop smoking/drinking, start eating healthily and think that you are preventing it. When I had cancer fears I was doing these and feeling in control. With ALS fears, there is only hopelessness so I got depressed. I got so depressed that I didn't even eat, go out or I don't know look at myself in the mirror. I'm doing better at the moment as last week I saw a neurologist and he said I'm fine but I know myself, it will come back with vengeance. I hate HA too and I'm so sorry you are back to cancer fears. I've been there, feared almost all cancers so if you need someone to talk to I'm here.

MrH
03-03-15, 13:19
I started getting twitches during my MS fears and for a brief time started thinking about ALS/MND. But this is how you need to think, as it veered me off entertaining that one.

First of all, your symptoms don't match it.

But also...

5,000 people in the UK have Motor Neuron Disease.
The adult population of the UK is over 50,000,000.
Therefore something like 0.01% of the adult population have it.

My point is even if you had strong signs of the disease (which you don't) it's still much more likely to be something else mimicking it, because it's a very, very rare disease.

Think of it like this - imagine you decide to give a talk to everyone in Britain with MND, and you book Sheffield Arena (as an example of a large but not humongous venue), and everyone turns up. The first thing you'd notice is that you had 7,500 empty seats. Then you decide to evict everyone who developed in old age, and just leave everyone who developed it at a similar age to you. I don't know the figures, but your audience would be embarrassingly small - you'd essentially be looking at an empty venue.

The point is that when it's something so rare as this, you need very very good reasons to think you actually have it, not worry about a hunch because your symptoms sound a bit like something you read. Chance is overwhelmingly, staggeringly on your side. Worrying about MND/ALS is like lying awake at night worrying where you're going to invest your lottery winnings* - just as chance dictates someone has to win the lottery, someone also sadly has to have terrible, rare diseases. But it almost certainly won't be you.

*Yes I know winning the lottery is even less likely, but my point still stands.

(BTW, if you wanted to find a venue to talk to everyone in Britain with Generalised Anxiety, good luck finding somewhere that seats - at some estimates - 2.5 million people. ;) )

popejoan
03-03-15, 17:23
Hello, MrH thanks so much for your post, it is very very helpful and I really appreciate it. I know there are more people who fear they have the disease more than those who actually have it but you know how HA works. I also have huge control issues so it's not surprising that I ended up being terrified of ALS as it's totally out of my control.

MrH
03-03-15, 21:08
I know there are more people who fear they have the disease more than those who actually have it but you know how HA works.

Yes I hope it didn't read like I was belittling HA, as I feared it might and wasn't intending to. I just find it makes it easier to start focusing on probability - which is something most websites are very bad at doing, just giving bulletpointed symptom lists without that kind of context. Finding that information can be very difficult, and hard to untangle even if you do find it.

popejoan
03-03-15, 22:57
No I understand what you mean and you are right.

Tinker28
05-03-15, 10:18
I like MrH post cause he is sooo right. It's rare and not one you should waste your time with and thank you popejoan for your comment I might take u up on your offer someday. :)

Fishmanpa
05-03-15, 13:58
Well... here it is, over a month since this thread started. A month that you could have been getting help and learning coping tools and methods to keep the dragon in his cave.

Fact: No one with this ALS "fear" has been diagnosed.

So, what are you doing to treat the real illness?

Positive thoughts

popejoan
05-03-15, 14:14
I started anti-depressants and will start CBT soon, I also started going to gym which make me feel happy. I'm doing better these days actually but it's just ALS fears made me depressed so this one is the hardest to overcome.

Fishmanpa
05-03-15, 15:37
I started anti-depressants and will start CBT soon, I also started going to gym which make me feel happy. I'm doing better these days actually but it's just ALS fears made me depressed so this one is the hardest to overcome.

That's great! Those are very positive steps!

Now, I'm going to suggest something that other veteran dragon slayers will affirm as well as your CBT therapist. This forum, while it serves a wonderful purpose in that you know you're not alone and the there's a certain cathartic benefit in writing out your fears, also is detrimental in that it keeps you focused on your anxiety and symptoms. I think you know this. Continuing to keep this ALS fear thread alive is essentially feeding the dragon. The sooner you begin to starve him, the sooner he'll go back to his cave. You would be better served keeping a private journal as opposed to feeding your fear here.

Positive thoughts