ALS and why you DON'T have it!

[LDHarv]

Today I read about a football player who had been diagnosed with ALS/MND and my anxious mind started to think all of these negative things but once again I came to this post and it really does take away any anxious or negative feelings .

I urge all people worrying to read this . It’s in black and white

Couldn't agree more!

Just went down the dark health anxiety hole again. Had my second GP's appointment today (after a blood test) and was around anxiety and the symptoms I've been experiencing. Basically, she didn't even examine me, should told me I don't have MND (ALS) and to stop thinking that. I've just started taking one Sertraline a day (anyone else?) and booked myself in for come CBT.

I came out more positive, second GP to tell me I don't have MND/ALS and that they weren't worried at all. Then I started worrying again for no reason, thinking about MND/ALS, thinking about early death, thinking about the terrible news from the footballer who is the same age as me and all things that come with that. I did some googling and read two articles, one saying that he first sign she had was aches in her arms and found it hard to lift things and the other talking about stiff fingers. Then it starts again, logic goes out of the window and the anxiety kicks in.

[Lawla81]

Hi LDHarv I have just registered with this site to reply to you, I have many symptoms of mnd and like you am here looking for reassurance that it’s not it, my anxiety has been extreme and I have a neurology referral next Friday and the closer it gets the more anxiety I’m suffering, and simply can’t believe that my symptoms could all be anxiety related, I’ve had symptoms since May and in June I too was put on sertraline and propanalol for anxiety, the reason I wanted to reply to you is because soon after I started to take them I went into a very dark place I was extremely low and so fatigued to the point I was going to stop taking them, I have 4 children and a partner that I hated seeing me that way, I believe it was a result of the tablets and after a couple of weeks i seemed to pick up from the lull and actually started to feel a bit better in myself, although still dealing with the symptoms I seemed to be able to not think about it all so much, the brain is an incredibly powerful tool and if you believe you have something enough you will start to show these symptoms, I think I need to listen to my own advice a bit more. I am a member of an mnd page on Facebook and found this to increase my anxiety I was looking for answers in the wrong place from people who have this awful disease rather than reasearching anxiety and the physical effects this can have on your body, I totally get what you mean with logic going out the window some days I totally rationalise my symptoms and am not able to think about it and other days I’m a mess thinking I’ve only got 3 years left with my babies, just remember we are young adults and look how many of us there are out there going through the same experiences falling into the same hole, health anxiety is very scary and it’s good to share experiences to know we are not alone xxx

[LDHarv]

Thank you for the reply and advice, it’s super appreciated. I had a rough morning as well (woke up feeling awful) and had a break down, lots of tears and feeling of helplessness. This post and this forum has made me feel slightly better. Thank you.

[jr11]

Hi,
My name is Jack and I have been living with the ALS fear for the last couple of months. I am 27 and had a very hectic spring with a lot of extra stress being brought into my life. Anxiety does run in my paternal family.

This venture all started in June with a slight left eye twitch that I blew off as nothing, followed by bouts of dizziness, uncoordinated feeling, and odd sensations while putting my body under heavy physical exertion. (Shakiness, feeling noxious) After 2 instances I went to the GP where I was given several blood workups, and different things to try to solve the dizziness issue. (Allergy meds, meds for BPPV) I was then confronted with a doctor who was nervous about my low pulse rate, 43-45 BPM. I am very active and run and lift weights a lot and have always maintained a low heart rate. I was given a cardiologist appointment 3 weeks from the date. (July 10th) I was extremely worried as the doctor suggested cardiomyopathy. I had a Holter monitor for 2 days, echo cardiogram, trach, and stress test with no negative results. I felt relieved but my symptoms and health anxiety persisted. I began to twitch in my left calf. I immediately googled this symptom and instantly regretted in. I found ALS/MS/BFS/Peripheral Nephropathy among other things. Since then the twitching has spread to the majority of my body. By August 15th I was very worried about the potential of ALS and began to feel even more uncoordinated, especially in my left hand. I have since went to a Neurologist (Sept 14) who did not suggest any reason why I should worry but ordered an MRI. I asked about ALS and the Nero had a hard time easing my mind due to a language barrier. (An Indian Fellow) I still have no clinical weakness in my left hand/arm but it still feels uncoordinated and twitches frequently. It also seems to burn a bit and feels slightly numb at times. My left hand, triceps, and shoulder seem to twitch and fatigue easily. It feels "tired" while doing minor tasks such as holding the steering wheel or carrying out 3 month old daughter. I am also frequently clearing my throat though it could be unrelated.

I know I am rambling a bit but this fear of ALS has slowly began to affect my life more and more and with military insurance, seeing a doctor can be tough. I am still working to get an MRI soon and will ask for an EMG on my left arm.

Any thoughts would be great,

Jack

[Fishmanpa]

Any thoughts would be great

Did you read the original post? Everything you posted points away from this illness. ALS is about "failure" not "feeling".

Positive thoughts

[Blue23Blent]

True.

[Berks123]

Iv been to my doctor twice worrying about als. The second time she checked all my limbs and looked for any muscle weekness which she said there was no sign of any.

She sent me for a vitamin d blood test which i believe can show signs of muscle weekness.

Since then iv been to A & E twice. First time the doctor again tested all my limbs and make me do a number of tests such as standing on one leg. She also made me drink a glass of water and made me move my tongue. She also asked if i had excessive saliva which i do. She didnt seem to have any worries about als and sent me on my way.

I again ended up in A & E again a few days later worried i again i had als because i was having twitches and stumbling when walking. Also pain in one foot that moved to the other and then all over my body.

Iv not fallen over at any point. The doctor i saw this time didnt examine me and said that was just suffering with anxiety.

Iv also been getting out of breath easily the last few monthes and was getting out of breath walking up stairs. The doctor listened to my lungs and said they were great giving me a score of 98 out of 100.

The last few days iv had excesive saliva that seems to have gotten worse as well as a croaky voice at times. My lips also keep tingling and twitching. When drinking a drink after swallowing it feels like i am drooling. Iv also had a really dry throat with what feels like a metallic taste in my mouth. Sometimes when talking to people it feels like my mouth is filling up with saliva.

For the last few months sometimes my voice would randomly break. This hasnt happened much recently though.

I can move my tongue and whistle.

My anxiety is going through the roof at the minute.

[Srrocoso]

Chances of getting ALS before 40 are very small, according to most studies in the US and Europe only around 0.3 per 100.000 people get it (or even less)


This post really helped me to relax a bit...

[trheiress0305]

I just wanted to give everyone here some insight into my past and current ALS infatuation. I’m a 30 year old, former athlete, white male... in other words (aside from age), a prime suspect for your typical ALS patient. I’ve struggled with all of the same symptoms that I’ve seen listed by many of you. But, I also happen to be incredibly good at math. When my ridiculously hyperactive mind goes to ALS I remind myself that 4-6% of cases happen before the age of 40, and our normal chances are already roughly 2 in 100,000. Not to bore anyone with the actual number... But we are all way more likely to die from some pretty crazy situations other than ALS. So, when my thumb looks smaller than the other or when my legs feel like jello or my eye won’t stop twitching for 3 days straight, I think about the actual numbers and what my neuro always tells me... what’s rare is rare. Sometimes it helps, but others it doesn’t. I test myself like crazy. I google, I research, I do EVERYTHING I am not supposed to do... but I’m the end it always subsides eventually. Sometimes it’s days, minutes even. And other times it’s months.

[Bella_89]

Hi all, I've joined NMP and hoping you guys can help me please, I'd be really grateful.

I'm 29 and have suffered with anxiety on and off for a long time. Mostly health anxiety. This was made worse by my daughter being very ill as a baby with a very rare heart condition (I have PTSD from that too). She's doing well now thank goodness...

Late November, I had a strange thing happen where I woke up with numbness, tingling and parasthesia from waist down, along with a strange tight feeling in my very lower back. It was very sudden. Then I began to feel generally weak and dizzy, and my left leg was weaker than my right according to a physio. Physio also said I was generally quite weak, but did say my muscles were engaging, just not very strong. I must be quite unfit to be honest. Reflexes were normal. The sensation slowly and mostly returned to normal, then came the muscle twitches and cramping (cramping gone now) and burning pain and tightness in legs and hands (hands in the outer halves, ring and pinkie finger areas so the ulnar nerve areas). I also had a strong banding feeling around my torso for about ten days. GP says it was most like some kind of inflammatory/autoimmune attack. My white blood cell count was high and has now come down. I also have hypothyroidism and low vitamin D. There are plausible reasons which explain it all but I cannot stop worrying about ALS. I know you guys can relate. I'm sorry you've been going through the fear too.

I was actually doing ok on the whole but then it only takes the tiniest piece of information to scare me into oblivion again... for example - last night I somehow ended up reading an article about a young woman diagnosed with MS, and she presented with numbness and tingling in her feet and legs. In the article, they said that at the hospital they tested her for ALS... cue tailspin... cue me searching can numbness and tingling be an ALS symptom. Many (including official ALS sources) say it can't but I found one site and one article where it said yes they can and now I'm freaking out. This is awful, and I'm barely functioning with worry. Then I start getting a tight feeling throat, ugh.

I have been gradually improving, and I seem to feel worse when I'm stressed and tired. The tingling makes a return when I'm stressed and anxious. Especially if I bend my neck forward. The pain in my legs today is pretty bad. And pain in my hands and fingers, although I can move my hands normally. The ulnar nerve area has remained very tight feeling, fingertips have like a burning pain as I type. I slept four hours last night because I was googling from 3am until half past 5...! The weakness, pain, twitching and tingling seems to be worse if I'm tired.

I might have had something called Transverse Myelitis apparently. I have been a bit worried about MS but nothing is scaring me more than ALS. But the presentation isn't right is it? I mean has anyone with ALS ever woken up one day with symmetrical widespread numbness and tingling, and that's how they presented. I keep asking myself these questions but the anxiety is just overriding everything.

Sorry I know this is long. Thanks so much for reading.