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4bready
28-03-19, 17:43
Hi folks
I just joined the other day. I am a 43 year old male with a history of HA. This is probably the worst it has been in the past 10 years. My current fear is ALS. I was worried about slurring speech and excessive saliva a few days ago but down feel that now. Currently my issue is in left arm/hand. My arm feels weak and tight. my wrist and hand feels tight and odd. I feel like my flexibility is off with left hand. I notice with making an L shape with pointer finger and thumb with left hand (I am right hand dominant), I can make L but when I curl my other three fingers into hand pointer finger curls and I can't straighten out finger. I can straighten out finger almost all way when I do this with right hand. Even typing now, my left hand feels light and weak. I am terrified, I have two small children. I workout a lot and am in good shape. I am just so terrified right now. This started with arm a few days ago. This is definitely embarrassing

Fishmanpa
28-03-19, 18:07
Please read THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) as often as you need to.

Positive thoughts

4bready
28-03-19, 22:26
thanks so much...My brain keeps telling me that my arm falls into the muscle weakness category :(

Yourboymj99
28-03-19, 23:24
Alright man, don't go falling down the ALS hole. Just get out of there. It's completely normal to be a little less flexible or coordinated with your less dominant hand. If you had ALS onset in your left hand it wouldn't feel any different from the right. It just wouldn't work and you would not be able to do the things you normally could do. Feeling has nothing to do with ALS. Don't let your anxiety trick you into thinking it does.

Take care

4bready
05-04-19, 03:42
Hey guys...I just joined the forum about 10 days ago. I started with the following post:
Hi folks
I just joined the other day. I am a 43 year old male with a history of HA. This is probably the worst it has been in the past 10 years. My current fear is ALS. I was worried about slurring speech and excessive saliva a few days ago but down feel that now. Currently my issue is in left arm/hand. My arm feels weak and tight. my wrist and hand feels tight and odd. I feel like my flexibility is off with left hand. I notice with making an L shape with pointer finger and thumb with left hand (I am right hand dominant), I can make L but when I curl my other three fingers into hand pointer finger curls and I can't straighten out finger. I can straighten out finger almost all way when I do this with right hand. Even typing now, my left hand feels light and weak. I am terrified, I have two small children. I workout a lot and am in good shape. I am just so terrified right now. This started with arm a few days ago. This is definitely embarrassing

Well...I was good for about 7 days feeling nothing and today I am feeling that tightness in upper left cheek/jaw and middle right cheek almost like spasm, but more just tightness, and my left arm feels weird at times. I know I have tight trap muscles and chiropractor worked on them today. My right eye gets slightly blurry but I had retina laser surgery two years ago for torn retina and I have had many dilated eye exams even one two months ago and all checks out fine as I read eye docs can see inflamed optic nerve with MS. I am super scared I have MS now. I thought I read MS can come and go so I can feel good for days then fire up for a few and back and forth. sorry guys I feel stupid :(

nomorepanic
05-04-19, 13:33
Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Yourboymj99
06-04-19, 05:56
Your anxiety is dragging you all over the place. Be careful what you read, an anxious mind can grab bits and pieces of information and run with it. Everything you mention sounds like classic physical affects of anxiety. At times, it can come out of nowhere. Even when you don't feel paticularly anxious at the time. Try to relax if you can. I know it's hard.

Take care

Murphy93
06-04-19, 19:11
I am in the exact same position - now into my 4th month of the horrible als rabbit hole . Been twitching like crazy . I am 28 years old and just barely functioning - itís taking over my life when I should be living it ! Trying really really hard to get back on track but itís a tough one to get out of . Iíve seen a few people come out the other side of it on this forum and I hope we are included in that category soon :(

Yourboymj99
07-04-19, 03:31
It really can't be stressed enough. Muscle twitching is absolutely harmless and normal. It is a frequent symptom from anxiety. Can also be caused by dehydration, fatigue, electrolyte deficiency or commonly no reason at all. Murphy your right, the ALS rabbit hole is a really tough one to get out of but you will just as so many others have as well.

Take care

Murphy93
07-04-19, 15:00
Thanks for the reply Yourboy - it really is one of hardest to get out of I thought after 4 I would be out of it by now but here I am . Canít believe I have became fixated on such a rare disease .

4bready
08-04-19, 02:16
Thanks for responding guys. I'm trying but I'm having this pressure/tight feeling in left cheek/jaw that has shifted to right side. It comes and goes through the day. It has me freaked out with MS. I googled that MS can cause face pain. I will get burning sensation at knee joint for like 2-3 minutes one time a day over last three days. Thanks for listening...I'm in that rabbit hole and can't get out.

Ben1989
08-04-19, 12:08
Hi 4bready,

I feel for you being in this rabbit hole – it’s a horrible one. However, I will start with saying you don’t have ALS. Actually ALS sufferers wish that ‘twitching muscles’ could be struck off the ‘symptom’ list as it is just not a symptom.

Firstly, ZERO ALS sufferers have ever heard of multiple areas of the body being struck at once. That is not how it works. It doesn’t just ‘shift’ to one part of the body. With ALS you would feel no tightness, you would feel no pressure, and you would actually feel zero weakness. Key wordbeing ‘feel’. ALS does not affect the sensory area of your body, it is the motor neurons so you would just not be able to do things.

I was down deep in the ALS/MS rabbit hole for a long period of time, others will probably vouch for that. I felt so much weakness in my right arm. It felt so strange. But it FELT strange. That is not ALS but I couldn’t convince myself so I had an EMG test and a couple of NCS’s on my arm. What cameback? Nothing. It eventually went away. It actually comes and goes but it doesn’t bother me and it goes and I don’t even notice the feeling has gone.

Then I panicked about bulbar onset as I had a twitch in my tongue. I convinced myself I wasn’t talking properly. Totally concentrating on all my speech in conversations. I wasn’t even listening to people I was solely focused on my talking. Bulbar onset is a very rare form of ALS on top of ALS already being super rare. Yep, I stopped noticing and nothing has happened.

MS was another one. I even had a MRI scan of my brain. Yep, nothing came back. Because you’re focusing on it you notice everything about it and you literally convince yourself you have it. You don’t. I also googled the face one and convinced my brain into thinking my cheek was burning. The brain is very powerful.

I get twitches all the time. They don’t bother me anymore and they disappear. I am 99% over my ALS/MS fears and I had a twitch in my cheek and chin for over a month. Every single day, every 30 minutes for over a month! I think I could justify being scared of ALS or bulbar onset but I wasn’t and it just went away.

You’re fine mate. You sound exactly like every other HA worried with ALS & MS who turn out fine. P.S. DO NOT GOOGLE

SQ
08-04-19, 19:55
Hello, I just joined today because of things I am experiencing now that I never have before in my life. I had a full time job and ran an HVAC business after hours for several years now up until the end of last year, I was tired all the time, but when I moved and quit my job I slept for days, and days. I figured I was wore out, and that was the reason for it, but I couldn't seem to get moving, and felt like I could not hit "the go button" (meaning I didn't seem to have any motivation to do anything). I have been tired in my life, but nothing like this. So I started looking at the same things that Murphy93 did, I mean we are seemingly like twins in this area (even the same age). I mean, its a serious issue that I haven't ever had before? but I felt like I had Bulbar ALS, then Limb onset and I do feel week and exhausted all the time. I have been having breakdowns and crying spells (when away from others) and it is a serious time in my life, and I appreciate murphy sharing the concerns he is having. It mirrors my own. I was/am concerned also. I have read almost everything on clinical weakness, and actual weakness (they call it atrophy or muscle wasting). Regardless, Im finding myself doing calf raises, push ups and strange things to see if one side is worse (even measuring to see which side is smaller than the other). It is an extremely scary path to travel, I have 4 kids. I do not know what is wrong, but it just doesn't feel right? One thing I have found that has helped me, I would like to share with Murphy is I found a forum on an ALS site entitled "why you don't have ALS" and I found a sticky and it is very long, but it was very insightful. It started out by saying "ALS is about failing not feeling". I am not here to say it solved my fears, I am struggling also because I just feel like something is zapping my energy? Like going down the road with the E-Brake pulled (holding me back kind of feeling). I want you to know Murphy, you are not alone, I am the same age and the concerns are real here also. I won't go into the list of symptoms i have been feeling, except to say I have another doctors appointment this week. I am glad I found this site, because i feel like maybe I can vent, trying to hide my concerns from others is even more exhausting. It is a lonely struggle, but I do feel your same concerns ring true with how I feel.

I did read the new member stuff so I hope I am not overstepping any boundaries? Again, I have never experienced anything like this.

Fishmanpa
08-04-19, 20:13
"why you don't have ALS" and I found a sticky

You mean this sticky? (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!)

I copied that over to try and help those in the ALS rabbit hole.

Positive thoughts

SQ
09-04-19, 03:18
Thank you Fishmanpa, I could not remember the exact details. That is what I was referring to. Also I had it wrong I said Murphy but it was 4bready I was mentioning we were having the same struggles. Sorry about that.

SQ

Murphy93
13-04-19, 21:18
Hi SQ sorry I havenít replied I was trying to take a break and get this under control . I totally relate to how your feel it is life ruining and I hope you Get out of this rabbit hole soon . I am doing slightly better I have been on anti anxiety meds and trying to remain positive . I am still twitching all the time , have muscle pain and horrible tingling in my arms upper back and feet but I am just trying to keep going and realise that after 4 months of worry nothing has changed and I have not deteriorated ! Well I hope itís a good thing lol ! Saturday night and I am still at home worrying but Iím hoping I can get over this soon I have holidays coming up soon And I donít want to look back with regret . I hope you Are all keeping well ! Oh and totally agree Fishmanpas post on Als literally is a life saver when Iím at my lowest which is often these days . I really want to enjoy the last year of my 20s not ruin it with a fear of Motor neurone x

4bready
14-04-19, 17:26
Hello, I just joined today because of things I am experiencing now that I never have before in my life. I had a full time job and ran an HVAC business after hours for several years now up until the end of last year, I was tired all the time, but when I moved and quit my job I slept for days, and days. I figured I was wore out, and that was the reason for it, but I couldn't seem to get moving, and felt like I could not hit "the go button" (meaning I didn't seem to have any motivation to do anything). I have been tired in my life, but nothing like this. So I started looking at the same things that Murphy93 did, I mean we are seemingly like twins in this area (even the same age). I mean, its a serious issue that I haven't ever had before? but I felt like I had Bulbar ALS, then Limb onset and I do feel week and exhausted all the time. I have been having breakdowns and crying spells (when away from others) and it is a serious time in my life, and I appreciate murphy sharing the concerns he is having. It mirrors my own. I was/am concerned also. I have read almost everything on clinical weakness, and actual weakness (they call it atrophy or muscle wasting). Regardless, Im finding myself doing calf raises, push ups and strange things to see if one side is worse (even measuring to see which side is smaller than the other). It is an extremely scary path to travel, I have 4 kids. I do not know what is wrong, but it just doesn't feel right? One thing I have found that has helped me, I would like to share with Murphy is I found a forum on an ALS site entitled "why you don't have ALS" and I found a sticky and it is very long, but it was very insightful. It started out by saying "ALS is about failing not feeling". I am not here to say it solved my fears, I am struggling also because I just feel like something is zapping my energy? Like going down the road with the E-Brake pulled (holding me back kind of feeling). I want you to know Murphy, you are not alone, I am the same age and the concerns are real here also. I won't go into the list of symptoms i have been feeling, except to say I have another doctors appointment this week. I am glad I found this site, because i feel like maybe I can vent, trying to hide my concerns from others is even more exhausting. It is a lonely struggle, but I do feel your same concerns ring true with how I feel.

I did read the new member stuff so I hope I am not overstepping any boundaries? Again, I have never experienced anything like this.

Hey, I hear you man. I am up and down. One day feeling good next feeling something in a new area :(
Last night I had some "visual snow" which I believe is anxiety...but I'm trying my best not to google...
This rabbit hole stinks...I hope I get out soon :(

SQ
16-04-19, 08:23
SQ here, thank you guys for not being afraid to reach out and for expressing concerns about medical issues or our own issues with anxiety. I know itís not always considered ďmanlyĒ to share feelings about these things. I to have been working trying to get through some of these things and clear my head. Staying busy has been helpful for me.

I really hate it when Iím exhausted and need to sleep, but my body wonít let me, it seems like these are the moments when I reflect on things I spent the day pushing away.

Thank you guys, I have been to the doctor and I am working through trying medication along with openly discussing these things with my family. I received the strength by reading what others have posted, that helped me reach out, I feel there can be healing/peace in numbers.

This is the first time I have ever posted on any forum, and I want to express my gratitude for those who shared their feelings and encouragement. Thank you

I am still trying to figure out how to do the ďintroduce yourselfĒ part? I donít seem to be able to get that to work? Anyway, thank you friends.

SQ

4bready
17-04-19, 22:45
I rally think I'm losing my mind... Iíve had back issues before. Today I hurt left low back in gym and about an hour later my left quad was feeling tingly and slightly numb. That feeling when you sleep on arm funny and itís ďasleepĒ when you wake up. Thatís what I feel in left quad. Iím freaking out just thinking itís onset of ALS or MS. I thought I read numbness and tingling is sign of these. I can fire muscles no problem
thanks friends I know this sounds nuts

Fishmanpa
17-04-19, 23:14
So you hurt your back in the gym and now you have some tingling in your leg. How do you jump from what is most likely a disc issue to ALS? Ohhh right... :doh:

Perhaps reading THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) will help.

Positive thoughts

4bready
18-04-19, 01:32
So you hurt your back in the gym and now you have some tingling in your leg. How do you jump from what is most likely a disc issue to ALS? Ohhh right... :doh:

Perhaps reading THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) will help.


Positive thoughts
I hear you...I know it sounds bananas...but I started with what I thought was face muscles getting weak a few weeks ago and thins got better, then arms. The tingling in quad muscles and slight numbness won't stop even thought I have no pain. Logic tells me yes I hurt ,my back. But my brain says "see its all in line with ALS". Sadly, my brain says the sticky about "why you don't have ALS" doesn't mention numbness/tingling so therefore it must mean I do have it...I know it sounds silly. Its embarrassing and it upsets me.

Fishmanpa
18-04-19, 02:45
I hear you...I know it sounds bananas...but I started with what I thought was face muscles getting weak a few weeks ago and thins got better, then arms. The tingling in quad muscles and slight numbness won't stop even thought I have no pain. Logic tells me yes I hurt ,my back. But my brain says "see its all in line with ALS". Sadly, my brain says the sticky about "why you don't have ALS" doesn't mention numbness/tingling so therefore it must mean I do have it...I know it sounds silly. Its embarrassing and it upsets me.

Respectfully, it is bananas but your reply recognizes that. The sticky says ALS is about failure not feeling. You're describing feelings. The issue is getting the irrational thoughts to stop. Words on a screen won't do that. Getting real life help and accountability to do the hard work to heal is paramount. You work out. In order to achieve results you have to go to the gym regularly. Apply that same practice to your brain. You need exercises and regular mental workouts to change your thoughts. Seek out a professional to help set up regime that will help you tame the dragon.

Positive thoughts

SQ
19-04-19, 05:52
This is SQ, want to reply to 4Bready, I understand what you are describing. I understand your concerns and to be concerned is normal.

I have things that I am experiencing right now that scare me to death, that is why I joined. I have had tests done also and so far things are normal? So what does that mean?

I read what Fishmanpa had to say, actually on several different peoples concerns, and he seems like a voice of reason. Seems like it rings true for me to hear what he says to others and apply those things to my own thoughts.

I myself have NEVER had any neurological, Depression or anxiety issues in my life... until I realized something is wrong with my body! I have been feeling that something has been wrong for a while now.... Guess what, I was right.

Finally I am starting to figure out what is wrong. I am understanding ďI believeĒ the pain of depression and anxiety? I am no Doc. But I can tell you this. ďMy legs feel the same as you describeĒ. I have what I would describe as internal small waves of electrical current I feel inside. The doc prescribed me an anxiety med. I took it and when I took it, it erased those feelings of the electrical waves? Do I understand it? No I do not, but Iím learning that whatever has triggered these things, I need to talk myself through it.

Yes, Iím still concerned, but reading things from others on the forum like, Fishmanpa, it helps me understand more about what is happening. That is Iím struggling within, or what is going on in my life is manifesting itself by way of symptoms of what I feel. Again do I understand it? No I do not! But I do understand that more work for me is needed other than reading things about symptoms.

I to have kids, itís a rough battle to get through, but we must. We must for our own families!

Consider this: ďif our families lose us to a serious illness, can we change thatĒ? No, we cannot. But consider what my sweet wife said to meĒif we lose you because you give up on yourself or destroy your own life worrying about some kind of illness, than we lost you all the sameĒ. Then we discussed this: I cannot have control over the first, but I can have control over the second sanerio.

Please understand I am struggling also, Iím only mentioning things and steps that are helping me climb out of the deep dark hole of despair.

I hope I have not overstepped any boundaries, as Iím trying to get better myself.

SQ

4bready
22-04-19, 22:25
This is SQ, want to reply to 4Bready, I understand what you are describing. I understand your concerns and to be concerned is normal.

I have things that I am experiencing right now that scare me to death, that is why I joined. I have had tests done also and so far things are normal? So what does that mean?

I read what Fishmanpa had to say, actually on several different peoples concerns, and he seems like a voice of reason. Seems like it rings true for me to hear what he says to others and apply those things to my own thoughts.

I myself have NEVER had any neurological, Depression or anxiety issues in my life... until I realized something is wrong with my body! I have been feeling that something has been wrong for a while now.... Guess what, I was right.

Finally I am starting to figure out what is wrong. I am understanding ďI believeĒ the pain of depression and anxiety? I am no Doc. But I can tell you this. ďMy legs feel the same as you describeĒ. I have what I would describe as internal small waves of electrical current I feel inside. The doc prescribed me an anxiety med. I took it and when I took it, it erased those feelings of the electrical waves? Do I understand it? No I do not, but Iím learning that whatever has triggered these things, I need to talk myself through it.

Yes, Iím still concerned, but reading things from others on the forum like, Fishmanpa, it helps me understand more about what is happening. That is Iím struggling within, or what is going on in my life is manifesting itself by way of symptoms of what I feel. Again do I understand it? No I do not! But I do understand that more work for me is needed other than reading things about symptoms.

I to have kids, itís a rough battle to get through, but we must. We must for our own families!

Consider this: ďif our families lose us to a serious illness, can we change thatĒ? No, we cannot. But consider what my sweet wife said to meĒif we lose you because you give up on yourself or destroy your own life worrying about some kind of illness, than we lost you all the sameĒ. Then we discussed this: I cannot have control over the first, but I can have control over the second sanerio.

Please understand I am struggling also, Iím only mentioning things and steps that are helping me climb out of the deep dark hole of despair.

I hope I have not overstepped any boundaries, as Iím trying to get better myself.

SQ

thanks for this...I just feel its a constant cycle. Finally felt better with face/arms feeling odd...and now for about three days I feel "off--balance at times throughout the day" its a weird feeling, its almost like I am going to fall to my right." My bring says there is no way its anxiety and that is must be MS or even a tumor...its exhausting. I hope I can get out of this loop :(

SQ
24-04-19, 01:28
This is SQ. Yes it is exhausting, I read on some other forums where some people were missing out on the greatest times of their lives because they were worried about an illness. (That was me also).

I am still having a boat load of symptoms and things that I canít figure out, but little by little, Iím working through it. Itís scary man, it really is. I understand it, I went on a trip with my kids, convinced I wouldnít be around for another one and would have crying spells, pretending to be happy when I wanted to cry out loud! But keeping it from my kids was exhausting for me!! It was a mess for me!!

But I do understand, and you are not alone!! Hang in there for you and those kids and your partner!! They all need you!! Yes itís not easy, but here is one thing to give you hope.

If it was ALS, the progression would manifest itself faster than just the symptoms you are describing. But then like me we say in our mindsĒwell, maybe itís MS because some of the symptoms come and goĒ?

Well my friend, that was my thoughts. But Iím working through all of it. As I have, my energy is starting to come back, and Iím not exhausted walking up a few stairs like I used to be? But a lot of it is anxiety.

Like when someone says,Ēhey, I HAVE LICEĒĒ. What happens? You immediately start itching and think you can feel them in your hair. Itís kind of like that! I read symptoms of my fears, and start to feel them! Then I freak out!! But Iím working through it, itís just a long road when it was as bad as I had it (anxiety that is)!

So I understand, no judgment here, because I been there and am slowly working my way out.

Thank you to all those who speak reason, it truly helps.

4bready
11-05-19, 01:02
Im adding to this thread I started. I apologize if not. SO I have the occasional ALS fear flare up. Long story short about two months ago I hurt back and had numbness in surface portion of left quad (upper part). Slowly feeling is coming back. My muscles have always been slightly smaller on left leg bc of two ACL surgeries. Ive been getting this feeling in small area of upper quad like a small spasm or maybe a twitch its kind of odd. its like a faint squeeze an release. It happens throughout day. IS that what people mean by twitching and fascilations (sp)? I could be wrong but I think I read that ALS almost never starts in proximal muscled it starts in distal muscles, feet/hands...Is this accurate? Thanks

gillebro
12-05-19, 11:20
Im adding to this thread I started. I apologize if not. SO I have the occasional ALS fear flare up. Long story short about two months ago I hurt back and had numbness in surface portion of left quad (upper part). Slowly feeling is coming back. My muscles have always been slightly smaller on left leg bc of two ACL surgeries. Ive been getting this feeling in small area of upper quad like a small spasm or maybe a twitch its kind of odd. its like a faint squeeze an release. It happens throughout day. IS that what people mean by twitching and fascilations (sp)? I could be wrong but I think I read that ALS almost never starts in proximal muscled it starts in distal muscles, feet/hands...Is this accurate? Thanks

Heya,

That sort of twitching sensation isn't an initial symptom of ALS. Remember, ALS is about failing, not feeling. So the fact that you're feeling these sensations points away from it.

Your symptoms sound like part of the normal recovery process from your injury. Also, as an anxiety sufferer, twitching and numbness and all that sort of stuff is common. Your body is in a constant fight or fight response when you're anxious, and that causes all the blood and energy to direct itself to more "essential" places, like the legs and other muscles, where the fighting or flying can happen. That messing up of the normal equilibrium causes all sorts of weird and often terrifying sensations. I recommend you look up physical symptoms of anxiety sometime. The list is a mile long.

Don't feel bad if this isn't reassuring. I say all this, but I have ALS freak outs all the time. I'm in the middle of one at the moment (more a 'I could get it in the future' freak out, but the two are somewhat related). I find that often the best course of action is to be bombarded with reassuring information until some of it sticks.