Still panicking about MND - looking for reassurance

[mel78]

Hi,

I posted a couple of weeks back about fears I was having about MND / ALS. It started about 2 months ago when I had sore fingers, then a sore shoulder and then after that I started getting muscle twitches.

Thanks to the good people here, I calmed down a lot (after one ruined family weekend away, it must be said). The muscle twitches come and go still. I get them in my legs, my arms, my chest and even the back of my head - but mostly arms and legs! I also had some problems with energy - I noticed that when I'd go for a long walk with my family I'd be absolutely shattered afterwards. In the last few weeks I've taken up exercise (especially cycling) and I think its helping a bit.

But I'm still worried about ALS. I especially freaked out today when I picked up a fork as I was heating up my dinner and it fell from my grasp. Now I wasn't holding it very tight or paying attention to it, but still, I know thats often one of the first signs of ALS. I've also noticed lately that my leg muscles feel like they're buzzing - especially when I am in bed - not twitching, but buzzing, and I cant really notice it on the surface when I feel them. I also had a really bad pain in my left foot last week - felt like a nerve or something.

How do I get over this? 2 docs did strength tests on my arms and hands in the past month and noticed nothing, but I can't move on. Just when I think I am over it something else happens. I mentioned to one of the docs that I think I have HA but her response was "stay away from the internet." I feel physically sick with worry right now. I am trying my best to stay away from Google - I haven't looked up ALS for week - but its not easy.

Thanks for reading.

[stacy1912]

you are not alone! I am in a panic about ALS too!! I have very bad shoulders and they both twitch alot! I have body wide twitching and the buzzing in legs in bed at night is terrible!! I wish I had never looked up on google twitching as it has sent me in a downward spiral! My GP did not make it better by saying "well, yes it could be ALS but would you want to know at the moment?" I am yet to go back and say please test me for this and I try to say to myself that it is very rare!

Please take comfort in the fact you are not alone with this fear!

One fact is that anxiety is a cause of these problems and muscle fatigue/injury can too. Try and stay positive and away from google!

[Rebecca10]

Hi Mel,

I get the twitching all the time too - it also comes and goes almost everywhere in my body although I feel it most at night time. I also used to get the buzzing feeling in my leg and tingling in my finger tips and toes. This has been going on for about 4 or 5 years now..and none of the doctors I've seen have ever thought it was anything serious- most of them have all said anxiety. I went to the docs today to pick up a prescription and mentioned to her that I had found a new twitching place right next to my knee which I had never had twitching in before. She really didn't seem concerned and told me if I was worrying about it so much that it was really getting me down then I could be referred to a neurologist just to put my mind at rest. But she said she wouldn't have referred me if I wasn't so anxious! So I'm just trying to trust what they say now - I also told her that I have googled my symptoms and she said that's a really bad thing to do obviously because it makes people believe they have every disease going! Also about you dropping the fork I wouldn't worry about it! I drop glasses, forks, cups etc too but I put that down to me being clumsy! Most people drop things!! I also had strength tests done on my arms and legs about 6 weeks ago and I've had them done many times before that and I've always been fine. Started on citalopram 6 weeks ago too and told the doc that I thought my twitching would have gone by now because of the medication but she said it's probably most beneficial to helping lift your mood than get rid of anxiety symptoms?! If I'm still worried then I will ask to see a neurologist but when the doc said she doesn't think i need to go it kind of helped me a bit. So yeah just stay away from google and know that muscle twitches seem to be a very common problem on here for anxious people! xxx

[mel78]

My GP did not make it better by saying "well, yes it could be ALS but would you want to know at the moment?" I am yet to go back and say please test me for this and I try to say to myself that it is very rare!

Stacy, I can't believe your GP said that to you. How amazingly inconsiderate. I already know the statistics for ALS - it is REALLY rare (especially if you are under 38 when its almost unheard of). If he knows you suffer with anxiety then its even more inconsiderate of him to say that - especially when twitching is SO common and ALS is not. Maybe time to get a new doctor?

Rebecca - thanks for your kind words. It really does help to know that there are others going through the same thing.

Its just getting me down so much now. I want to be able to move on but every time I feel I might be coming out of this cloud of anxiety I discover some other "symptom" and get set right back to square one. I was physically sick last night (had to stop myself throwing up) and could barely speak to my wife - to the extent she was worried there was something wrong with me.

Do you think a person with ALS would be able to increase strength by working out? Thats what I am trying at the moment. The exercise makes me feel a bit better and I am trying to tell myself that I wouldn't be able to increase my strength if I had anything serious wrong with me. Unfortunately, I'm really weak and scrawny to start with so I guess any exercise would have to show some results but its the only thing I have to reassure myself right now.

[Rebecca10]

You're welcome Mel! I'm also glad that I'm not the only one feeling this way (as horrible as it is!) I'm 23 and have had this fear of something dreadful happening to me since I was 18 and first started getting the symptoms - I also want to be able to move on and not worry about every symptom I get but it's so hard. Are you on any medication at the moment? I was reluctant to start taking any at first but I do think that since being on citalopram it has lifted my mood and I don't feel as on edge - I still worry a lot but not to the extent I was. I was also physically sick when I had blood tests done and for some reason I mis-heard what the receptionist told me on the phone and thought I had something wrong with my bones - I couldn't stop crying and throwing up worrying myself sick that something serious was wrong...anyway turns out everything was fine and I had mis-heard what she had said! It's awful feeling like this but I hope one day I will no longer care and just get on with life without worrying about everything. If I hadn't ever googled my symptoms I really don't think I would have been so worried! I think exercise can only ever be beneficial to anyone - but I really think if you had ALS you wouldn't be able to do exercise?! If you're so worried then see your doctor and explain every single symptom and ask to be referred to a neurologist to put your mind at rest maybe? I went to a neurologist about a year ago when I had the tingling and buzzing sensations in my legs (which have since gone) and she just shook her head and said there was absolutely nothing wrong with me and told me I need to start enjoying life and stop worrying! Which is easier said than done ha! Now I just have the annoying muscle twitches to deal with and occasional aches and pains!

[stacy1912]

I had been twitching for a few months without really taking much notice, then one night I thought "why am I twitching so much?" looked on google and Boom there it was ALS! Then from that moment the twitching increased and I have had a very miserable few months. Constantly strength checking, walking tip toed and on my heels. Along with major panic if I drop anything, feel like I am slurring or unable to swallow (all because I read these symptoms too!!) I am 37 soon and think yikes I am getting older and ALS is likely!!!

I so wish we could all relax and enjoy our lives as we'll be 70 before we know it and full of regrets about wasting time.

Take care

[mel78]

I so wish we could all relax and enjoy our lives as we'll be 70 before we know it and full of regrets about wasting time.

You're right there Stacy. I'm worried I will get to be 70 and look back thinking of all the time I wasted worrying. Of course, right now, I'm thinking I won't see 35, never mind 70.

I do the exact same tests - walking on heals, on toes, hopping, pickup up books with my tumb and finger to test my hand strength, tightening tops on bottles, etc. Its daft really but sure what can we do. The worry never seems to go. I cant believe SO MANY people have this ALS fear. Its really horrible. I look at my lovely children and worry that I will leave them without a daddy :-( or without even being able to remember having one.

Right now I am thinking, ok, if I started worrying two months ago, how quickly would things progress if I actually had ALS. Would I notice definite signs within two months? Would it take longer? How long before I can definitely put this down to anxiety?

[stacy1912]

unfortunately I have thoroughly invesitgated the many ALS forums hoping to find some reassurance. But, it seems this disease can happen in many ways, slower onset, weakness first, twitching first, fast onset etc etc Everyone is different with this particular disease.

What is clear though is that it is RARE even if you are in the typical age bracket (50-60) and it is even RARER for it start with twitching for months first.

Blimey listen to me...............if only it was so simple not to think "I will be that rare person!!!"

Take care

[Gazman]

I was physically sick last night (had to stop myself throwing up) and could barely speak to my wife - to the extent she was worried there was something wrong with me.

I too was physically sick and lost alot of weight through the anxiety and fear of MND 2 years or so ago.

Do you think a person with ALS would be able to increase strength by working out? Thats what I am trying at the moment. The exercise makes me feel a bit better and I am trying to tell myself that I wouldn't be able to increase my strength if I had anything serious wrong with me. Unfortunately, I'm really weak and scrawny to start with so I guess any exercise would have to show some results but its the only thing I have to reassure myself right now.

I don't know but I doubt very much someone with this horrible disease would be able to increase strength.
Doing exercise is great for anxiety, I don't know if trying to prove you don't have MND by doing exercise is good for you though, it seems like the wrong mind set to me, like another strength test . Exercise should be fun and /or to feel good and healthy.

I do the exact same tests - walking on heals, on toes, hopping, pickup up books with my tumb and finger to test my hand strength, tightening tops on bottles, etc. Its daft really but sure what can we do. The worry never seems to go. I cant believe SO MANY people have this ALS fear. Its really horrible. I look at my lovely children and worry that I will leave them without a daddy :-( or without even being able to remember having one.

Stop doing the tests, easy for me to say now, I used to do them too, exactly like you did, I'm suprised I didn't injure myself picking up armchairs with 1 hand, finding the heaviest book in the house and trying to pick that up with a finger and thumb, hopping up and down the stairs etc etc etc...

Every time you want to test yourself, you gotta stop it - that's what I did... eventually, it's tough but you got to be strong, you know it's anxiety, so believe it and live your life! same goes for google too!

[j2]

Mel,

Sorry to hear you are struggling again. Drop me a note if you want to talk. I know how you feel and I SURE you will be fine but I know you are struggling now. One thing I wanted to send your way was that there is a retired neurologist that is member here that frequently responds to folks regarding all types of fears but his ALS/MND posts are the best. He goes by RLR here. If you search for RLR and find one of his posts, clink on the RLR and you can then go to his profile and see all of his posts. There is a treasure trove of data there. I have never emailed him directly via NMP but I am sure others have. Of course he cannot directly diagnose you but his insights into classic neuro diseases is worth it's weight in gold for a guy like me. Give it a try, it helps me. BTW... there may be easier ways to find his posts but that is how I do it.

Jeremy