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wishiwasfree
04-04-20, 17:45
I’ve been in a health anxiety spiral since middle of February when I developed and have since recovered from Bell’s Palsy. But since the stress of that sent me in a downward spiral and now I’m convinced I have ALS and I’m so scared, I don’t want to leave my babies behind without a mom :(

I first started having what a consider to be weak muscles in my left arm and leg the night I got home from the ER after being diagnosed with Bell’s Palsy. I had to CT scans and they couldn’t find anything, but I was still convinced I had a brain tumor so I had a panic attack when I got home. After that I have had the following symptoms I will list: and I yes I have read the thread about ALS being about failure and not feeling and I have a failing , I’ll tell you below. :( I’m literally shaking as I type this.

-Random twitches all over body. Comes and goes. Sometimes it twitches so hard I can see it.
-Perceived weakness in my left arm, hand and leg. thumb feels kind of weird as I’m typing on my phone.
-a couple of weeks ago I went to the ENT because I felt like a had trouble swallowing/had to force myself to swallow. When I told him this happened after Bell’s palsy he said “hmm that’s interesting” I said what do you mean and he said “I just think it’s interesting you’re having trouble swallowing after having Bell’s Palsy and both those have to do with nerves” I asked him to elaborate what he thought but he wouldn’t tell me. Now I’m freaking out thinking he was thinking of ALS.
-here’s where I’m having a failing and literally shaking with fear since I first noticed this morning. On my left foot, the side of my body where I feel like I’m having some weakness, I can’t curl my pinky toe all the down!!!!! Omg I literally can’t breathe, I’m only 32 why is this happening to me?!! And no, I’ve never broken this toe. I’m so scared

Carys
04-04-20, 22:07
All the things you describe can come from a very over-active HA mind, 'trouble swallowing' and having to force yourself to swallow has been listed in anxiety books since the beginning of - anxiety books being published LOL Twitches, yep, common. 'Perceived' weakness is just that, not real weakness. The toe thing - one of mine I can't curl in the same way as the other side, and I kid you not, I noticed it a year or so back when I was trying to do my toe nails.

I've told this story on here before, about the power of the human mind. I thought I had a brain tumour and was losing the use of the left side of my body about 35 years ago. I ended up falling over, having the left side feel weak and with loss of function, eventually I lay in bed bar hobbling to the toilet for a few days and had assorted other left side symptoms. Pain behind left eye, pain in my head, partially closed eye and a few other things. None of them were real. Within a few weeks I was entirely physically functioning again. I think the Bell's Palsy has likely set off a spiral for you. The doctor most certainly didn't think ALS, as if he thought that you'd have been referred onwards to a neurologist !

wishiwasfree
04-04-20, 23:03
Thank you so much for taking the time to respond to me! It really means a lot! Yep I had zero of these symptoms until the Bells Palsy attack that set me off. I have had HA since about 5 years old, and I had a good run where I haven’t had a spiral for about 7 years. Unfortunately the Zoloft I’m on isn’t helping as much as it used to. It makes me feel a little better to know one of your toes doesn’t curl the same as the one on the opposite side. I hate that notice every little thing about my body.

And I did see a neurologist for my Bell’s Palsy, and he did the strength tests, checked my balance and reflexes. I had a brain MRI that came back fine, but I know that wouldn’t show anyway if I had ALS.

Hijikata
05-04-20, 00:05
I also have a toe that doesn’t go all the way down. I’ve been, and kinda still am, in the ALS rabbit hole and it’s honestly the worst because so many of the symptoms can be interpreted in so many different ways. I just went to the neurologist for a 6 months revisit and they said everything was completely normal: strength, reflexes, no atrophy etc. and I still asked for peace of mind can I get an emg, and she flat out said no lol. More power to her as well for not giving in. I also have what I think are tongue issues when swallowing saliva, but as cary said, it’s like the number one anxiety symptom, with number two probably being those twitches we all have. It’s when you start thinking about it that it becomes harder to do because your body is not used to having to think about it, you just sub consciously do it.

Carys
05-04-20, 09:25
And I did see a neurologist for my Bell’s Palsy, and he did the strength tests, checked my balance and reflexes.

Then, you are checked by a professional- and don't have ALS. Its really that simple :o)

1234icg
05-04-20, 17:28
Hi
I'm with you in the health anxiety!!
November I started muscle twitching, and more recently my right hand and thumb doesn't feel right!!
I have multiple sclerosis and had an appointment with my neurologist end of January and told him how concerned I was about the twitching, he examined me and said no need to be concerned, but the wrist has started since I saw him which has me worried. Also the swallowing thing is awful for me!! I've had weeks of excessive swallowing, it went away last week and came back yesterday, only when my brain thought 'oh you haven't done that for a while'!!
Health anxiety sucks, I hope you can be a bit more reassured.
Take care

wishiwasfree
05-04-20, 19:14
Thank you all for taking the time to calm me! I appreciate it so much, and I’m glad I’m not the only one experiencing these symptoms. I’m glad I’ve found this forum with people who understand how terrible health anxiety is. And yes, I had my swallowing “problem” go away for multiple days to when I wasn’t thinking about it. I just need to remind myself if we had something terrible our symptoms wouldn’t just come and go.

Murphy93
05-04-20, 19:33
Thank you all for taking the time to calm me! I appreciate it so much, and I’m glad I’m not the only one experiencing these symptoms. I’m glad I’ve found this forum with people who understand how terrible health anxiety is. And yes, I had my swallowing “problem” go away for multiple days to when I wasn’t thinking about it. I just need to remind myself if we had something terrible our symptoms wouldn’t just come and go.

I just wanted to let you know I am exactly on the same page as you with regards to this fear that it’s taken up pretty much a year and a half of my life . I really hope you can beat it before you get to my stage As I constantly look back in regret . I’ve had this perceived swallowing problem for 6 months and twitching for 15 months - again comes and goes and not a coincidence when I am more anxious and allow my thoughts to get the better of me! For the record I’m still here with no weakness or speech problems yet !

I really hope you feel better soon and I am always here if you need a chat - the lovely people on this forum have really helped me on some of my darkest days

Hope you are okay!

wishiwasfree
10-04-20, 23:41
I made the mistake of googling muscle atrophy and now I’m convinced I have it on my left side. I’m so tired of living my life in a blind panic :( my left arm still feels weak-ish and kind of aches. I haven’t actually lost any strength. My husband says it’s because I carry our 22lb 8 month old on that side, but wouldn’t I be getting stronger and not weaker?!

wishiwasfree
12-04-20, 14:20
Since yesterday I feel like I have a muscle spasm in my throat, back of my tongue and it’s making it hard to talk. I’m so scared this is a bulbar symptom. I’m shaking from fear. I was up in the middle of the night for 2 1/2 from anxiety because I was woken from sleep twice with a shooting pain in my throat. My neurologist appointment isn’t for another month. I can’t keep living like this 😢

Fishmanpa
12-04-20, 18:47
I've followed your thread and I could see the classic ALS rabbit hole sucking you in from the first post. In my personal experience and opinion delving into the world of hypochondria, I've found the ALS rabbit hole to be one of the deepest. Please know I'm not making light of your fear. I know, to you, this is very real. That said, to me, who sees what you've written, taken into context the FACTS (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!) about ALS and nearly word for word similarities to most ALS fear threads, while you have a physical cause and effect, your interpretation and subsequent mental spiral are heavily skewed due to your anxiety and you're suffering the physical side effects of stress added to the actual physical issue that started it.

Positive thoughts

wishiwasfree
30-04-20, 02:03
I’m back after having a few worry free days. I originally didn’t come back to the thread after fishmanpa’s reply because he is such a voice of level headed reason and I felt ridiculous. Things were starting to go better for me, I was feeling a bit less weak, symptoms seemed less. And then yesterday I started noticing Myoclonus. I was just sitting relaxing and my leg jerked a bit by itself. And then the other leg did it a little while later. And it continued as such today. I googled (I know I absolutely should never google) to see if anxiety could cause this. But could only find horrible diseases it could be a symptom of. Including ALS. I just feel doomed. And hopeless.

Fishmanpa
30-04-20, 13:01
I’m back after having a few worry free days. I originally didn’t come back to the thread after fishmanpa’s reply because he is such a voice of level headed reason and I felt ridiculous. Things were starting to go better for me, I was feeling a bit less weak, symptoms seemed less. And then yesterday I started noticing Myoclonus. I was just sitting relaxing and my leg jerked a bit by itself. And then the other leg did it a little while later. And it continued as such today. I googled (I know I absolutely should never google) to see if anxiety could cause this. But could only find horrible diseases it could be a symptom of. Including ALS. I just feel doomed. And hopeless.

The dragon (https://www.nomorepanic.co.uk/showthread.php?197857-Dragon-food) will grab onto a grain of salt to keep itself alive ;)

Positive thoughts

whome
13-05-20, 22:20
The dragon (https://www.nomorepanic.co.uk/showthread.php?197857-Dragon-food) will grab onto a grain of salt to keep itself alive ;)

Positive thoughtsI don't mean to intrude on this thread but this post was the first I saw when I opened the site today and wow did I need to see that. It's like it was meant for me. Lol thanks Fishmanpa.

Wishiwasfree...anxiety CAN do that. Just like it caused my muscle twitches for months on end as well as what my doctor called perceived weakness. Not true weakness when tested , however. Remember that anxiety can cause a lot of physical symptoms or simply make u notice them more.

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wishiwasfree
16-05-20, 01:11
Thank you everyone! It’s so nice for people who understand to take time out of their day to try and make a stranger feel better. I’ve been having a few better days, a little less worry. I wish my darn bicep would stop twitching! It is driving me insane. I’m so ready to see the neurologist on Monday.

whome
22-05-20, 13:33
Thank you everyone! It’s so nice for people who understand to take time out of their day to try and make a stranger feel better. I’ve been having a few better days, a little less worry. I wish my darn bicep would stop twitching! It is driving me insane. I’m so ready to see the neurologist on Monday.Have you gone to the neurologist yet? Just checking in on you and your anxiety.

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wishiwasfree
25-05-20, 18:14
Have you gone to the neurologist yet? Just checking in on you and your anxiety.

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Hi! Thank you for checking on me, it means a lot. Anxiety has been a bit less, as has the twitching. (Knocks on wood) I did have my neurologist appointment, and it really did not set my mind at ease as I’d hoped it would. He looked my arms and legs over back and front, looking for atrophy I guess. Looked in my mouth. Tested both knee reflexes and a couple on my arms. He told he does not think I have ALS. Then he had to go and throw in “could I be wrong, yes. But I don’t think I am.” Well you know my mind latched onto that and I felt like my heart dropped into my stomach when he said that. He told he does not think I even need an EMG but he would give me one if it would put my mind at ease. So I’m having one June 10th. Pretty nervous. Also he wants to get a ck blood test, I think that tests for muscle deterioration?! So of course after I left his office I’m like, if he doesn’t think I have it why do I need this blood test to check for muscle deterioration?!? Ugh I hate my mind.

whome
27-05-20, 13:00
Hi! Thank you for checking on me, it means a lot. Anxiety has been a bit less, as has the twitching. (Knocks on wood) I did have my neurologist appointment, and it really did not set my mind at ease as I’d hoped it would. He looked my arms and legs over back and front, looking for atrophy I guess. Looked in my mouth. Tested both knee reflexes and a couple on my arms. He told he does not think I have ALS. Then he had to go and throw in “could I be wrong, yes. But I don’t think I am.” Well you know my mind latched onto that and I felt like my heart dropped into my stomach when he said that. He told he does not think I even need an EMG but he would give me one if it would put my mind at ease. So I’m having one June 10th. Pretty nervous. Also he wants to get a ck blood test, I think that tests for muscle deterioration?! So of course after I left his office I’m like, if he doesn’t think I have it why do I need this blood test to check for muscle deterioration?!? Ugh I hate my mind.

As you said...he said the testing was to ease your mind. That's why he's doing the tests. [emoji3526] Don't overthink it. You said it yourself. If it were up to him he wouldn't have even scheduled them.

Before he made the comment about "could I be wrong?" Had he already told you that you didn't have it? Did you continue to question him seeking reassurance and that was his reply? Only asking bc I seek reassurance so hard during anxiety that I ask the same questions from every angle. The doctor's answer almost seems like a response to questioning. Maybe your anxiety only truly let you hear this one part of what he said.

Sounds like he did a thorough exam. Reflexes, muscle response must've been normal for him to him to decide that he didn't think you needed an EMG.

I think you will feel much better after your EMG. I don't know if you have ever had one. I had heard stories of how painful they were. It didn't bother me. I have a high pain tolerance or maybe it was that I was looking so forward to knowing what was going on that I just didn't care lol it's really not that bad so don't be nervous over the test itself. You can put all of this anxiety behind you after your appt. [emoji3526]









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Cbowl
27-05-20, 18:29
So sorry you’re going through this. I am in a deep spiral of anxiety over this as well. I also feel weakness in the arm/hand that I use to carry all of my kids including my 20+ lb baby. I think that is a huge factor though - repetitive stress can cause muscle weakness. I hope you get some peace of mind soon - I keep re-reading the facts post whenever I am panicking.

wishiwasfree
03-06-20, 22:51
Thanks for the reply’s. I’m lousy with replying the way I should. I swear every time a symptom goes away two new ones show up in its place. I’m so emotionally drained from the constants anxiety. And I still have one whole week until my emg/ncs. The twitching has left my bicep and moved too the sides of my palms, random places on my abdomen and my right thigh :/ Not to mention now it feels like saliva is getting stuck in my throat, same weird feelings in my tongue, tickles inside my nose like I constantly have to sneeze and can’t. And I swear a couple of times I felt like I had nasal regurgitation when drinking something. I’m so scared I can’t think straight. And when I asked my neurologist if he would check my bulbar muscles he said no that he didn’t think he needed to! Idk I’m just beside myself and mentally planning my own funeral and saying goodbyes to my children :(

alcopop
04-06-20, 15:38
Hi all. I'm going through the ALS fear too. It started with these small jerks of my head (only noticeable to myself) and then random twitching all over my body at random times. I also feel extremely weak and shaky, and random muscles seem to move at random times. I phoned my doc the other day to increase my anxiety medication... He said it sounded like anxiety symptoms and he said he didn't think it sounded like ALS. Obviously I'm still expecting more symptoms to develop. I can totally relate to all your posts, especially when you saw the neurologist and he said "Could I be wrong, yes". That would've triggered me to freak out too. I had weird anxiety dreams all last night and night before about me being in the doctors surgery and I kept asking them for reassurance it isn't ALS.... Feel so drained :( My body is even twitching as I'm typing this. *sigh*

wishiwasfree
18-12-20, 22:22
Back again with same fears. I hade my EMG and nerve conduction study done in June and it all came perfectly normal. Neurologist told me to stop worrying, but then says “could you go on to develop als in 6 months? Maybe But I don’t know” wow dude thanks for that. Well anyway after that I was anxiety free for quite some time and all my twitches went away!! But slowly my anxiety started creeping back in and with it came the twitches :/ now I’m having pain in my left forearm, elbow, wrist and thumb along with twitching and my thumb shakes if I move it a certain way. I shouldn’t have googled these symptoms, I know!! But please someone tell me why everything I see on google says muscle pain and twitching is one of the first signs of als??? I’m so scared. So freaking scared.

glassgirlw
18-12-20, 22:26
Muscle pain can also be directly linked to excess tension during periods of heightened anxiety - as can twitches. I’ve had both.

wishiwasfree
18-12-20, 22:36
You are right. I’m just so concerned as it’s this one arm only and not both. Wish I had never learned about als.

KR21
26-01-21, 02:16
I have all these symptoms as well. My arm aches and feels weak. I carry my 3 year old on that side. I’m having twitching all over randomly. I have neck stiffness. A tremor like thing in my thumb when scrolling on my phone. And I have overactive reflexes. I have been in this hole for a few weeks and I’m losing my mind. I’m going to neurologist tomorrow and I’m so scared. So scared.