View Full Version : I have petrified myself ALS help me

Anxious lu
12-11-12, 12:50
I was googling twitchy legs in relation to anxiety and an als strength test came up..

I tried it out to see what I was like and I could complete the test but did struggle.. Im not a fit person and my balance was a bit off..

I then progressed to google If ALS would show on an MRI scan and scrolled down google and a page said that it doesnt..

Now Im absolutely shitting myself about having ALS to the point Im crying..

When I write this I notice my knees are clenched so am hoping it is down to tension but I often get random twitches mostly in my legs..

I feel sick to the stomach I don't know what to do?!??!

12-11-12, 13:11
Sorry for are feeling like this. I really feel for you. I have these random tingling, twitching, legs hands and arms and constantly worry about brain tumours. My brain MRI was clear as everyone probably knows. Then I thought diabetes was causing it, but those tests were fine. I literally some days cannot walk and lose feeling in both of my legs. This is one thing I agree with my GP about, that it is anxiety related (with me anyway) and that if I am able to calm myself down, it does improve. If you google, then it will obviously tell you that it is something horrible, Did you say you had already had a MRI, if so and it was clear then that has got to be reassuring.

Anxious lu
12-11-12, 13:22
Yes I am obsessing over it now..

The MRI showed clear but then I found ALS doesnt show up on this scan.. it was reassuring for a while until I found a disease with muscle twitches that doesnt show on this scan..

I am only 20 and what to live my life but I feel like I will die prematurely..

I dont know what to do anymore the twitches arent constant but are every day at the moment .. ive had them elsewhere in my body but they are mainly in my legs.. When I am up and about I dont notice them but when I am rested they are often there twitching away!

12-11-12, 13:45
ALS at 20 is next to impossible. You have to calm down

Anxious lu
12-11-12, 13:48
OH IS IT? I forget how young I am sometimes its just so scary everything is so scary all the time..

Why cant i get over the fact I am not dying or I am not going to die prematurely.

When i thought i had HIV i didnt when I thought I had stroke and heart attack I didnt, cancer.. no, brain tumor.. no

the list goes on.. however everyday a new disease and even knowing I havent had the previous thousand diseases I think this time I'm right..

12-11-12, 13:59
I agree, if you are only 20 then would think the chances are zero!! I diagnosed myself with brain stem tumour , lung cancer, lymphoma this is in the last 3 months and I have not got any of them! If you saw a neurologist before your scans then would have thought he would of had a an idea if he suspected anything like ALS. HA is horrible I know only too well.

---------- Post added at 12:59 ---------- Previous post was at 12:57 ----------

Anxiety can cause muscle twitches. My legs and hands are always twitching when I am worried.

Anxious lu
12-11-12, 14:04
No unfortunatly the scan wasn't for ms it was in relation to symptoms of stroke.. obviously i didnt have stroke. Those fears came after but knowing there was no abnormalities on the MRI KIND OF put that to rest..

Thank you for the support guys.. I need to see a neuro in january about my migraines and Im terrified he will say its something worse etc..

If the possibility of me having ALS at twenty is close to zero maybe I should GET OVER IT.. easier said than done..

12-11-12, 14:34
Hello anxious lu.

1st, yes you are right ALS will not show on a MRI,
2nd ALS at 20 yes next to zero
3rd twitching muscles does not point to ALS if anything muscle twitching is one of the final stages in ALS by then you would have many other symptoms and be very ill,
4th stop doing any kind off strength test you find on the net ie hoping on the stairs and doing the other stuff it could cause you more harm than good ie strains and sprains.

5th I have been and done all you have and it is a very scary place to be and that was over 20 months ago and my muscle still twitch like mad non stop it is nothing to worry about look up aboutbfs.com that will explain a lot. But please try to stop worrying about ALS I got into such a state at one time I was writing letters to my wife and kids to say sorry for not being around to see them grow up and I was already planning to leave home And just vanish from the face of the earth as not to be a burden to anyone. Bloody glad I did not as I am still here and no ALS.

If you need to chat about anything send me a message as I have spent a lot of time reading up about ALS and reading up on ALS forums to help ease my mind when I was going down that road.

Anxious lu
12-11-12, 18:02
Well thank you so much.

What you went through sounds awful it's just terrible that we can belive we have something without proof so much .. I did that was HIV I felt uncomfortable around my niece incase she caught it.. And every time I pricked myself at work with a clothing tag I would bin it etc..

I'm glad your over it now and can move on I hope I can forget ALS and move on

12-11-12, 18:50
You will get over it and move on but what you have to try and do is when you have got over the ALS scare is to try and learn from it that you NEVER had it and you NEVER had HIV.

We can never say well never suffer from something but we can learn not to let our minds over rule or common sense.
I have had a HIV test done (when I was 18) because my tattooist was also on drugs and would tattoo people in his house and most of them were on class A drugs and sometimes he would not sanitize the needles But that was a fear that came to nothing.

But a friend told me that having Anxiety mean that ever niggle and twinge, or ache and pain is amplified because we are always look for it.
I'm only just learning this but a friend of mine is teaching me about it and how to hopefull over come it all.
I will be posting my friends message to me as he hopes the teaching he is giving me will help others as he is a fellow suffer that is using his understanding of anxiety to hopefully help others

Anxious lu
12-11-12, 19:05
Wow yeah that would be scary it's so refreshing when you get you don't have it though for a whole until your mind moves on to te next thing.

Certainly understand what you mean about pains getting highlighted. My knees just had a random twinge pain and my heart sank.. I always asks Boyf do you et this or that.. It does his head in :-(

Pm me any words of wisdom are definately welcome.

13-11-12, 00:18
I'm 17 and worrying i might have ALS, hearing that it's next to impossible to get it this young has put that fear to rest.

Anxious lu
13-11-12, 00:49
Its not nice is it but certainly reassuring words to hear x

13-11-12, 14:48
I'm 17 and worrying i might have ALS, hearing that it's next to impossible to get it this young has put that fear to rest.

At 17 is impossible...the youngest ever in the World was 18 I think

13-11-12, 14:59
At 17 is impossible...the youngest ever in the World was 18 I think

Hi, ALS can strike at any age but mostly the older you are the higher the possiblity but I have read about as young as 13 and that was hereditary from what I understand, but and I will say but the internet is full of misinfomation.

Anxious lu
13-11-12, 15:21
Great so I have reason to be concerned again..

13-11-12, 15:41
Great so I have reason to be concerned again..

NO has anyone in your family had ALS/MND I would think the answer is no.

Muscle twitching is not not a sypmtom of ALS that would send someone to the doctor, From what I understand the Muscle twitch happens after the muscle had died by then you would have had muscle wastage and loss of muscle tone and also very severe strength loss in the muscle.

But before any of that you would have multiple other symptoms

So NO it is a case of anxiety fueling it and more than likely Benign Fasciculation Syndrome http://www.aboutbfs.com/

---------- Post added at 14:41 ---------- Previous post was at 14:33 ----------

Hi Lucy, Have sent you a pm and now for the long message

Anxious lu
13-11-12, 15:46
Okay thanks for brining me back down to earth.. My family is extremely healthy.. No cancers, heart problems, strokes or ALS/ms in the entire family I know.. This only makes me worry more things have been too easy for us..

The only issue that runs in our family is few of us get migraines, depression and addictions.

13-11-12, 15:56
Okay thanks for brining me back down to earth.. My family is extremely healthy.. No cancers, heart problems, strokes or ALS/ms in the entire family I know.. This only makes me worry more things have been too easy for us..

The only issue that runs in our family is few of us get migraines, depression and addictions.

Sounds like what runs in most familys, Just kick back enjoy your lecture unless it is boring then make loads of paper airplanes:yesyes:

13-11-12, 17:37
https://docs.google.com/viewer?a=v&q=cache:bSGhdpBiBJMJ:www.lancsteachinghospitals.nh s.uk/my_files/Benign_facilitations_FINAL.pdf+benign+fasciculatio n+syndrome+nhs&hl=en&gl=uk&pid=bl&srcid=ADGEESiJRShUltmdBAKbQ2BULWeF76RILF4pz9OnDvCE xpS64mKa5REtze3kyGmG3sSCYobyLjhb7AAIWM0u0ybQ7f-hTjXjtszharNilAEd2iw69VKp594QlAi8oKMqw7_l9MqgOUGC&sig=AHIEtbSyhlV_s3wQwqS62zQImeLsaY1TVQ

13-11-12, 18:11
https://docs.google.com/viewer?a=v&q=cache:bSGhdpBiBJMJ:www.lancsteachinghospitals.nh s.uk/my_files/Benign_facilitations_FINAL.pdf+benign+fasciculatio n+syndrome+nhs&hl=en&gl=uk&pid=bl&srcid=ADGEESiJRShUltmdBAKbQ2BULWeF76RILF4pz9OnDvCE xpS64mKa5REtze3kyGmG3sSCYobyLjhb7AAIWM0u0ybQ7f-hTjXjtszharNilAEd2iw69VKp594QlAi8oKMqw7_l9MqgOUGC&sig=AHIEtbSyhlV_s3wQwqS62zQImeLsaY1TVQ

That is a nice link. I use the forum at www.aboutbfs.com (http://www.aboutbfs.com) very insightful.

I have had BFS for nearly 2 years know and for me it is nonstop action in my calves just have to live with it and understand even though it can present like it could be linked to als, It is a totaly different thing as it says Benign.

One day it would be nice not to see my muscle's twitching/spasms looks like popcorn popping all the time and feels like snake's under the skin.

But thats life.:doh:

Anxious lu
13-11-12, 19:44
both very helpful and interesting websites..

I have some of the symptoms described in the second one left by xtremx


14-11-12, 13:02
When I discovered fasciculations on my calves I was petrified just like the OP and started checking behaviours that involved strength tests and exercising my calf muscles. I was even more frightened whenI found that I could do slightly more calf thrusts with my right leg than my left!

After a couple of days of doing this several times a day my calf muscles were quite sore. After a week they were stronger, firmer - and identically so.... In the meantime I googled fasciculations and discovered aboutbfs.com. I didn't find it particularly reassuring though because it seemed to suggest that ALS would have to be eliminated following nerve tests. This idea scared me even more and set off all sorts of "What if....?" thoughts.

It is an American site and there seems to be a culture within US healthcare that all serious illnesses need to be eliminated rather than simply assessing the risk of serious illness given various factors including signs, symptoms, age, gender etc.

The good thing about the NHS/Lancashire Teaching Hospital link is that it suggests that further testsare really not necessary in most cases,

"Neurophysiological examination (if required)....." That was a lot more reassuring.
I went to see my GP and told him about them and my fears. He did some basic tests that included shining a torch into my eyes, some basic coordination tests, shook his head and said,

"I don't think you have Motor Neurone Disease."

He checked me for Carpal Tunnel Syndrome though because it runs in our family and suggested nerve conduction tests FOR THAT REASON ONLY because one of his tests, of my right wrist was inconclusive. He also said that the test was not a necessity so I declined it. Neurology was scary and I really didn't want to go there.

This was March last year, so 20 months ago. The fasciculations come and go, they are more noticeable the morning after a few evening drinks or if I'm a bit stressed out about something. They don't frighten me anymore.

14-11-12, 15:12
Hi jules147, Your post reads alot like how I was, I was always doing the strength tests you find on the net, untill it made my muscle's ache more than normal.
I was also measuring my calve muscles most days looking for wastage sounds extreme I even took photos of them to compare every week.

But like you said the GP will do some basic tests at the office that will be very helpful and should calm the fears.
And like you its been nearly 2 years with this constant fo me and I'm still here

Anxious lu
14-11-12, 15:50
It is nice to know that people have the same fears although I wouldn't wish them on anyone of corse.

My twitches are certainly worse the day after a heavy night ant the more I concentrate on them the worse they get and other symptoms appear. As I am rather young and have had many illness fears with no outcome I will just Try and remove it from my mind.

I see a neuro in january for migraine anyway so if it's worse or still bothering by then I'll mention it :)