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1 hour ago, Cubanborn87 said:

@Holls I just got out and it went so so. Obviously the appointment was to follow up on my anxiety so that was his main focus. He gave me Prozac and Atarax to deal with my anxiety. He wants to see me in a few weeks again. I made the follow up appointment 2 weeks after the EMG.

 

I showed him my hand, how the bone pops out and how my second knuckle pops every time I move it up and down. All he said was I don't know. I don't know what's going on there. If you want I can refer you to an orthopedic doctor so he can look at it. He said he knows it would make me feel better so that's the reason he would put in the referral. I said ok , let's do it .

 

Then I asked him about the thumb , I told him my hand feels fine. But my arm sometimes is buzzing even though it gets better with gabapentin. I asked him if there was anyway to check the strength of each thumb, because that's something that the neurologist did not address. Even though he checked basically everything else. 

 

He basically said no there is no way to check the thumb. He didnt really want to do any type of strength test. He said that there is definitely something going on, but it's not what I keep obsessing about. 

You can tell by now everyone basically thinks my head is the issue and they are barely even paying attention to the rest of my concerns. Oh well...

 

There you have it  

Cuban,

This post tells a good story, but I expect not the one you are telling yourself in your head.

Neither your PCP nor your neurologist thinks you have ALS.  They are not blowing you off, but trying to address your anxiety.  Let me put it a different way, if you had an actual serious disease, office visits don't go this way at all.  When she suspected MS, my neurologist had me in for testing relatively quickly, and after confirmation, had me in very quickly to discuss all the treatment options.  Your doctors' responses tell a lot.     

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2 hours ago, Cubanborn87 said:

@Holls I just got out and it went so so. Obviously the appointment was to follow up on my anxiety so that was his main focus. He gave me Prozac and Atarax to deal with my anxiety. He wants to see me in a few weeks again. I made the follow up appointment 2 weeks after the EMG.

 

I showed him my hand, how the bone pops out and how my second knuckle pops every time I move it up and down. All he said was I don't know. I don't know what's going on there. If you want I can refer you to an orthopedic doctor so he can look at it. He said he knows it would make me feel better so that's the reason he would put in the referral. I said ok , let's do it .

 

Then I asked him about the thumb , I told him my hand feels fine. But my arm sometimes is buzzing even though it gets better with gabapentin. I asked him if there was anyway to check the strength of each thumb, because that's something that the neurologist did not address. Even though he checked basically everything else. 

 

He basically said no there is no way to check the thumb. He didnt really want to do any type of strength test. He said that there is definitely something going on, but it's not what I keep obsessing about. 

You can tell by now everyone basically thinks my head is the issue and they are barely even paying attention to the rest of my concerns. Oh well...

 

There you have it  

All of that sounds good. I don't think he's blowing you off.. it's good he's not entertaining your fears. If he was worried he would have tested your thumbs. That was all looked at by the neuro.. he didn't have to test the thumbs alone to know they were ok. 

If a Dr is sending you with anxiety medication that says your answer. They don't send serious illnesses away with a prescription of anxiety meds. 

This is all a good thing. 

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@DoxieMoxie @Holls I don't know , I actually had an anxiety attack this morning. I felt really helpless and doomed. I was at work and kept reading ALS articles, I know very bad idea. The more I read the more I was sure that I had it. I almost broke down crying. I had to call my wife to calm me down, all I could think all of a sudden was how my 6 year old Sophia (Who I love with all my heart) is not going to remmeber me and it crushed me.

I read how pain could be associated with ALS if you put strain in weak muscles. I also ready how atrophy is what causes the limb to start failing. I also read how it moves from 1 problem limb to an adjacent one which is what I have been experiencing. Also read how you can get those myoclonus jerks after the disease has been around .

You guys know how I believe I have atrophy on my problem side both limbs. You know how I have been getting those myoclonus jerks. I first noticed them on the elliptical back in October, but now I am noticing them while walking or sitting etc. This morning I did the toe test and then the toes on that problem side were hurting all morning. Let's not mention my thumb issue. I am sorry guys, I know I am spiraling out of control. I know you guys have been very patient with me. 

I just feel like I have the A. The more time goes on and the worse my symtoms get. The more sure I am. The test is still 2 weeks away. This is driving me crazy. Sorry , I know I am a mess right now.

Ever since my symtoms started back in October they have gone from bad to worse and new symtoms showing up every few weeks.

At this point I think it will take a miracle 

I am praying for a clean EMG. I really hope for the best news, but I am fearing the worse.

Lately the jerks have been non stop.

Yesterday, I started noticing that my shoe seems to be looser on my problem foot.

 

I know basically everyone that posts here does not have the A.

But, I am afraid that I am the "unlucky" on to suffer from HA and also have the A.

 

Sorry , I am devestated.

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Agree with Doxie and Holls. You doctor is concerned about your anxiety. If he thought you had ALS he would not have just given you a prescription for meds and sent you off. He wants you to see an ortho for your hand if you want because he doesn’t know why you have the clicking and popping but he DOES know it’s not ALS or any other serious neurological issue. He is not ignoring your concerns but is addressing them by saying you can follow up with ortho. What else do you want him to do? 

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3 hours ago, Cubanborn87 said:

@DoxieMoxie @Holls I don't know , I actually had an anxiety attack this morning. I felt really helpless and doomed. I was at work and kept reading ALS articles, I know very bad idea. The more I read the more I was sure that I had it. I almost broke down crying. I had to call my wife to calm me down, all I could think all of a sudden was how my 6 year old Sophia (Who I love with all my heart) is not going to remmeber me and it crushed me.

I read how pain could be associated with ALS if you put strain in weak muscles. I also ready how atrophy is what causes the limb to start failing. I also read how it moves from 1 problem limb to an adjacent one which is what I have been experiencing. Also read how you can get those myoclonus jerks after the disease has been around .

You guys know how I believe I have atrophy on my problem side both limbs. You know how I have been getting those myoclonus jerks. I first noticed them on the elliptical back in October, but now I am noticing them while walking or sitting etc. This morning I did the toe test and then the toes on that problem side were hurting all morning. Let's not mention my thumb issue. I am sorry guys, I know I am spiraling out of control. I know you guys have been very patient with me. 

I just feel like I have the A. The more time goes on and the worse my symtoms get. The more sure I am. The test is still 2 weeks away. This is driving me crazy. Sorry , I know I am a mess right now.

Ever since my symtoms started back in October they have gone from bad to worse and new symtoms showing up every few weeks.

At this point I think it will take a miracle 

I am praying for a clean EMG. I really hope for the best news, but I am fearing the worse.

Lately the jerks have been non stop.

Yesterday, I started noticing that my shoe seems to be looser on my problem foot.

 

I know basically everyone that posts here does not have the A.

But, I am afraid that I am the "unlucky" on to suffer from HA and also have the A.

 

Sorry , I am devestated.

Have you ever just tried believing it's not "A" and is actually anxiety? I mean honestly, I was down the rabbit whole just about 3 weeks ago still, and had symptoms like crazy. I went to a counselor, talked to my pastor, took some anxiety medicine, and the symptoms have really subsided a lot in just a week since my EMG. I know you haven't had the EMG yet, but why not listen to others, your doctor, and believe that you really don't have this very rare disease that typically doesn't even affect people in their 30s. Stop focusing all your attention on the one thing that is least likely, and focus on what's more likely, that these symptoms really are Anxiety related. You aren't thinking rationally, and with all the testing, retesting, reading this and that, it's taken control. You have to pick yourself up and take back control, you can do it, we all know you can. But it's up to you climb out. 

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12 minutes ago, ScaredGuy said:

Have you ever just tried believing it's not "A" and is actually anxiety? I mean honestly, I was down the rabbit whole just about 3 weeks ago still, and had symptoms like crazy. I went to a counselor, talked to my pastor, took some anxiety medicine, and the symptoms have really subsided a lot in just a week since my EMG. I know you haven't had the EMG yet, but why not listen to others, your doctor, and believe that you really don't have this very rare disease that typically doesn't even affect people in their 30s. Stop focusing all your attention on the one thing that is least likely, and focus on what's more likely, that these symptoms really are Anxiety related. You aren't thinking rationally, and with all the testing, retesting, reading this and that, it's taken control. You have to pick yourself up and take back control, you can do it, we all know you can. But it's up to you climb out. 

Thank You for the support. To be honest with you even though the A fear was always in the back of my mind. I was able to subdue that fear for a long time. Actually about a year and a half. It wasn't until the last month or 2 that I started feeling a variety of symtons that have sent me on this downward spiral . It has been really tough to deal with, it's just so many symtoms that have came up. Just before that I was feeling great. I am actually scared and terrified about how quickly this seems to be moving. The amount of different symtoms in such a short period of time has been overwhelming.

I know I am in a very dark place right now, I want to climb out of it. I was telling my wife yesterday how I just want to wake up one day to find out this whole thing has been a nightmare. I am trying to keep hope, but as time goes on the more defeated I feel. 

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7 minutes ago, Cubanborn87 said:

Thank You for the support. To be honest with you even though the A fear was always in the back of my mind. I was able to subdue that fear for a long time. Actually about a year and a half. It wasn't until the last month or 2 that I started feeling a variety of symtons that have sent me on this downward spiral . It has been really tough to deal with, it's just so many symtoms that have came up. Just before that I was feeling great. I am actually scared and terrified about how quickly this seems to be moving. The amount of different symtoms in such a short period of time has been overwhelming.

I know I am in a very dark place right now, I want to climb out of it. I was telling my wife yesterday how I just want to wake up one day to find out this whole thing has been a nightmare. I am trying to keep hope, but as time goes on the more defeated I feel. 

My husband was there for me when I was spiraling.. he would console me when I was down but eventually he had a real talk with me and it wasn't a good one.. he told me he was afraid to leave our children alone with me because I couldn't function. He was upset that the kids were seeing me in the state and he wanted his wife back. He made me get up and walk.. he made me mediate. He took the internet off my phone for two weeks so I couldn't  google .. idk what I would have done without that help. What is your wife saying about all of this? I know it takes a toll on our loved ones.. but when they hear the Drs say no but your still saying yes.. it has to be hard on them..

You need to get tough on yourself.. this morning you were back to reading stories?? What the hell? It has to stop or the EMG will mean nothing to you. 

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7 minutes ago, Holls said:

My husband was there for me when I was spiraling.. he would console me when I was down but eventually he had a real talk with me and it wasn't a good one.. he told me he was afraid to leave our children alone with me because I couldn't function. He was upset that the kids were seeing me in the state and he wanted his wife back. He made me get up and walk.. he made me mediate. He took the internet off my phone for two weeks so I couldn't  google .. idk what I would have done without that help. What is your wife saying about all of this? I know it takes a toll on our loved ones.. but when they hear the Drs say no but your still saying yes.. it has to be hard on them..

You need to get tough on yourself.. this morning you were back to reading stories?? What the hell? It has to stop or the EMG will mean nothing to you. 

My wife has been really supportive. She knows I deal with a lot of anxiety issues. So, she doesn't buy any of it, even though she has tried her be as the to support me. That has been one of the toughest parts of it. Most of the people in my family , because I have cried wolf before because of my anxiety. Are not taking this seriously at all. My wife is, but she doesn't quite buy it. She thinks is all anxiety based.

But, the symtoms I am having are quite real and scary. That is what has been kind of frustrating to me, that most people don't quite buy what I am going through. Of course I am talking about family members. 

I have been very good about keeping all this away from my kids. Even though the oldest one mind of notices there is something going on. I have tried my best to not overwhelm my wife because she does so much taking care of the kids, etc. That I don't want to suffocate her. But, I have relied on her a lot. She has been there for me, but thinks most of what I am dealing with is anxiety 

I was actually hoping the other day that k have anything but the A. Even cancer, how can I be so sure? Specially when most other people are so sure I am wrong.

I know the chances of getting the A, are super slim . So I keep asking myself how did I get so unlucky? I know this sounds terrible because I don't have a diagnosis yet. I am hoping for anything but that MS, you name it.

 

I was actually pretty devestated when I found out that muscle twitches is not part of MS.

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I was actually thinking the other day about how my toes started acting up in November and now just 2 months later my thumb is acting up. Isn't that kind of fast? I was telling myself. Almost like it hit both places at once. 

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1 minute ago, Cubanborn87 said:

I was actually thinking the other day about how my toes started acting up in November and now just 2 months later my thumb is acting up. Isn't that kind of fast? I was telling myself. Almost like it hit both places at once. 

It doesn't hit both places. What you describe from twitches to numbness to toe and thumb issues.. none of those are als symptoms. But your mind has you convinced :(

i understand what you said about MS!!! Wow I had that same reaction. I remember thinking ok.. maybe I have MS and I can handle that but when I saw twitches wasn't a symptom I felt panicked again. Ugh!! The als rabbit hole is something else. I trusted my Dr though and her and my husband is what pulled me through. If you can't trust your Dr...this is all on you 

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7 minutes ago, Holls said:

It doesn't hit both places. What you describe from twitches to numbness to toe and thumb issues.. none of those are als symptoms. But your mind has you convinced :(

i understand what you said about MS!!! Wow I had that same reaction. I remember thinking ok.. maybe I have MS and I can handle that but when I saw twitches wasn't a symptom I felt panicked again. Ugh!! The als rabbit hole is something else. I trusted my Dr though and her and my husband is what pulled me through. If you can't trust your Dr...this is all on you 

I hope you are right Holls, there is nothing I want more than having a clean EMG and then coming back here and saying wow guys you were right. I was so out of it. I go to bed every night hoping that day comes in 2 weeks. 

 

Yeah, as soon as I started with the A anxiety. I was trying to convince myself I had MS as well. It's funny how e thought the same thing.

Yeah I am having a huge issue trusting the doctors. I think the main reason is because I am convinced I see atrophy in both of my problem limbs. I kjiw neurologist said "I don't think so". The doctor today just simply said "I don't know" . something is off, that hand doesn't look normal and it's right where the thumb is , same thing with the foot.

Hopefully it's nothing. But I notice how sluggish and slow that thumb is compared to the other . This is something that has only been going on for 5 days now. I am hoping that it's something wrong with the bone or something, but I feel kind of hopeless because I see the dents on that part of my hand.

 

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19 minutes ago, Cubanborn87 said:

I hope you are right Holls, there is nothing I want more than having a clean EMG and then coming back here and saying wow guys you were right. I was so out of it. I go to bed every night hoping that day comes in 2 weeks. 

 

Yeah, as soon as I started with the A anxiety. I was trying to convince myself I had MS as well. It's funny how e thought the same thing.

Yeah I am having a huge issue trusting the doctors. I think the main reason is because I am convinced I see atrophy in both of my problem limbs. I kjiw neurologist said "I don't think so". The doctor today just simply said "I don't know" . something is off, that hand doesn't look normal and it's right where the thumb is , same thing with the foot.

Hopefully it's nothing. But I notice how sluggish and slow that thumb is compared to the other . This is something that has only been going on for 5 days now. I am hoping that it's something wrong with the bone or something, but I feel kind of hopeless because I see the dents on that part of my hand.

 

I understand.. I also understand how when I was going through this.. the words people used really effected me.. for example.. it's probably ok.... Maybe it's anxiety.... I'm not sure... Try not to worry ..........those would send me in a panic.. I wanted a you do not have als I know this 110% I never was told that.. my Dr said it in different ways but not the way I wish she would have.. so I had to really talk to myself and get through it all. I think that's why I always went to the als forum.. I would think we'll they don't understand the full story.. so I would re-word it. I'm rambling lol my point is I do understand what you are going through. Your emg is coming up fast. It will be here before you know it. 

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5 minutes ago, Holls said:

I understand.. I also understand how when I was going through this.. the words people used really effected me.. for example.. it's probably ok.... Maybe it's anxiety.... I'm not sure... Try not to worry ..........those would send me in a panic.. I wanted a you do not have als I know this 110% I never was told that.. my Dr said it in different ways but not the way I wish she would have.. so I had to really talk to myself and get through it all. I think that's why I always went to the als forum.. I would think we'll they don't understand the full story.. so I would re-word it. I'm rambling lol my point is I do understand what you are going through. Your emg is coming up fast. It will be here before you know it. 

Thank You for understanding, I am very appreciative if how you have tried to help me.   

 

2 more weeks!!

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No offense, but if you’re not a doctor you don’t know what you’re looking for with atrophy. I’m not a doc either, but my guess is you are seeing normal differences in your problem limbs (we are NOT symmetrical beings) and atrophy would be so easy for a doc to spot there is no way they would overlook that.  

We've all been in a spiral before, feeling like people don’t understand or believe us. You say the feelings are real, yes they certainly are! I don’t think your family is trying to say you’re making it up or not feeling what you say you are. What they are saying is that your anxiety is making you feel the way you do. Think about all the posts you read on these forums, all the complaints of dizziness, headache, nausea, tremors, twitching, aches, pains, brain fog, tiredness, etc...and we all think they are caused by something (usually nothing good) but it is almost always anxiety. Or something treatable and benign. As someone on here has said their doc told them “You’re not special. You are not the 1 in a million that has XYZ.”  At some point don’t you think that you should try to accept that you don’t have ALS? Is all the worrying going to help? Will it change the outcome? What if you accepted what everyone is saying? Would it be terrible not to be consumed by this every waking moment? 

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Yes iugrad.. and also when I went to therapy I had to fill out a questionnaire on where I was with my anxiety.. it asked are you currently having muscle aches, vibrating, twitches, weakness.. dizziness.. brain fog etc.. these are anxiety symptoms and the questionnaire was to see how anxious in was and how my body responds to the anxiety. At the time I was buzzing and had twitches and weakness. My therapist said it's so so so common. I felt like a huge weight had been lifted.. that these symptoms really are from anxiety

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@Iugrad91 none taken, you are right. I am trying, I really am. I really hope that the EMG will give me the first step into climbing out of this hole.

You are right, I am definitely not trained to spot atrophy. My fear was that this is the beggining of it and that's why they might miss it. 

Each time they looked at it hard and seemed confused even. Just judging off the look in their face. I didn't feel very confident to be honest, with their response

 

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1 hour ago, Cubanborn87 said:

My wife has been really supportive. She knows I deal with a lot of anxiety issues. So, she doesn't buy any of it, even though she has tried her be as the to support me. That has been one of the toughest parts of it. Most of the people in my family , because I have cried wolf before because of my anxiety. Are not taking this seriously at all. My wife is, but she doesn't quite buy it. She thinks is all anxiety based.

But, the symtoms I am having are quite real and scary. That is what has been kind of frustrating to me, that most people don't quite buy what I am going through. Of course I am talking about family members. 

I have been very good about keeping all this away from my kids. Even though the oldest one mind of notices there is something going on. I have tried my best to not overwhelm my wife because she does so much taking care of the kids, etc. That I don't want to suffocate her. But, I have relied on her a lot. She has been there for me, but thinks most of what I am dealing with is anxiety 

I was actually hoping the other day that k have anything but the A. Even cancer, how can I be so sure? Specially when most other people are so sure I am wrong.

I know the chances of getting the A, are super slim . So I keep asking myself how did I get so unlucky? I know this sounds terrible because I don't have a diagnosis yet. I am hoping for anything but that MS, you name it.

 

I was actually pretty devestated when I found out that muscle twitches is not part of MS.

I know all of your symptoms are anxiety because you have admitted to crying wolf before like I have lol I have had a person inspect me for a DVT, colonoscopy, ingrown hairs, multiple disease tests, all amounting to nothing 

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15 minutes ago, A11yance said:

I know all of your symptoms are anxiety because you have admitted to crying wolf before like I have lol I have had a person inspect me for a DVT, colonoscopy, ingrown hairs, multiple disease tests, all amounting to nothing 

That's the issue lol becuaee I have had a few HA episodes before. No one is buying it this time around. But , I tell you what. Even though A was in the back of my mind for sometime, I didn't have any anxiety issues until last 2 months that I have been feeling all these symtoms 

 

-side note to everyone :I type very fast and never double check my typos. I am always horrified how many typos I have each time that I write on this site. Sorry for that, I am not as illiterate as I type lol 

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Does anyone have experience with myoclonic jerks. I notice them a lot while laying down in bed or even in the sofa while watching TV. They are becoming more and more common. 

 

I also get the hypnic Jerks every night. 

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5 minutes ago, Cubanborn87 said:

Does anyone have experience with myoclonic jerks. I notice them a lot while laying down in bed or even in the sofa while watching TV. They are becoming more and more common. 

Yes. I have had them in the past. They’re harmless. Hiccups are myoclonic jerks.

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Yes I had them at my.highest anxiety. My entire body would jolt. Sometimes my leg, sometimes I felt like someone punched me in the gut. Mine were always when I laid down to sleep. My Dr said they are harmless. 

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1 hour ago, Cubanborn87 said:

That's the issue lol becuaee I have had a few HA episodes before. No one is buying it this time around. But , I tell you what. Even though A was in the back of my mind for sometime, I didn't have any anxiety issues until last 2 months that I have been feeling all these symtoms 

 

-side note to everyone :I type very fast and never double check my typos. I am always horrified how many typos I have each time that I write on this site. Sorry for that, I am not as illiterate as I type lol 

And I’ve told you I’ve never had this many symptoms before either. It’s embarassing because my past HA scares I’ve brought up to friends, family, coworkers, etc and each time they turn out to be nothing. I feel like if anything serious does happen to me in the future that they will all down play it because of all the false times I’ve told them about other health scares. Your mind is powerful and HA of the “a” is causing your mind to create its symptoms much like mine did, Stronger than any other HA scares because the “a” is one we cannot test for. Now that i am calmer I no longer have a lot of the symptoms anymore...

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@clearhead @Holls Thanks, I get small ones when I lay down to watch TV etc. Where my ankle may move or hands or fingers. But yes the ones when falling asleep are the ones that I feel my body jolt.  Recently I have been feeling them every night. 

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52 minutes ago, A11yance said:

And I’ve told you I’ve never had this many symptoms before either. It’s embarassing because my past HA scares I’ve brought up to friends, family, coworkers, etc and each time they turn out to be nothing. I feel like if anything serious does happen to me in the future that they will all down play it because of all the false times I’ve told them about other health scares. Your mind is powerful and HA of the “a” is causing your mind to create its symptoms much like mine did, Stronger than any other HA scares because the “a” is one we cannot test for. Now that i am calmer I no longer have a lot of the symptoms anymore...

I finally picked up my medicine from the pharmacy. I am hoping that with it, I will finally start improving. This has been a very scary episode , hopefully it's just anxiety and nothing else. Well, anything else but the A.

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Does anyone know the difference between myclonic jerks vs clonus?

 

Tonight has been really bad I can barely sleep, I have been in and out of sleeping. As I lay down in my bed I keep getting this small jerks. I don't think this are the hypnic Jerks that I used to get.

Each day I keep getting more and more and today I even have them on my jaw which is something completely new. It is mostly on my feet, even though it can happen in my upper limbs too.

Per example sometimes I lay in bed and I feel a contraction that make my toes and maybe even the foot slightly move. Is that clonus? 

Also, if it happens in the hands too as I am falling asleep to the point that my fingers move. Is that clonus or is clonus basically only the ankles?

I am really worried. I don't know what's going on but this is really scary . These symtoms seem to be moving very fast. I don't like this at all.

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