Cubanborn87

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I agree with what holls said. My fear isn't als more oral cancer. I am on my 5 year of horror. I should have got the mental health i needed along time ago. I don't think i would have gotten so bad if i did. I have twitches everywhere most recently my tongue. So i think its oral cancer or als. Writing this now it sounds ridiculous. And i am sure most of here have had doubts in are doctors but we are all still here. So us self diagnosing are selfs is 99.9 percent of the time are wrong. And for me the more my body craved this doom and gloom feeling the more issues it would create. Try to not get where i was last year. Felt like i was treading water with weights around my neck. I am still treading water but every day gets better. You pull through and trust me the more thought you put into als the more your mind and body will make stuff up. It is that powerful.

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6 hours ago, Holls said:

Ok.. here's my story.. don't be like me. 

I had a panic attack two years ago in January. I was having weak wrist with pain. (My carpal tunnel flaring) this time I googled. Big ass mistake Bec I put weak wrist and hands.. guess what pooped up? Als..well I had panic attack after panic attack. I went to my PCP the next day. She said no als gave me a steriods pack and it helped. I settled down a little until that night I went to bed and my calves were twitching.. never twitched in my life. Well I remember reading it's a symptom. I almost passed out. I freaked my husband out!! It was bad.. well I was convinced it was all als. But we both know.. that's no it even how it works but you couldn't tell me that. My left leg was horribly weak.. thigh vibrated.. twitches in calves like crazy.. my left foot felt off, diff, weak.. I got better after my family came to me with their worries about me. Therapy helped but I kept the left leg/foot fear with me for a year and a half. A year and a half!!!!!!!!!!!!!!!!!!!! Ok.. if you don't stop now you will be like me. Don't be like me. I still freak out if I trip.. I have a panic attack and I have to journal why I'm ok. That is how bad of a rabbit hole this can be. So when we are all saying no and giving you advice please understand there are stories behind us wanting someone's else to get better. But what I learned the most through the whole thing was I was the one who had to help myself..I was the one who had to tell my anxiety nope, not true. I was the one who let the scary thoughts come in and float right back out.. I journaled my ass off to keep things rationalized. You can't stay still.. you need to make an effort to move forward. Wether it's calling a therapist, mediation, journaling, working out, anxiety guy on you tube .I did them all.. I was determined to get better. Get determined! 

Thanks for sharing your story with me. I definitely want to get better and I understand that I need to. But, the issue for me is. Why is there so much stuff going on at once and it doesn't go away? It seems too coencidental. I see now improvement at all, right now I just woke up. I am still in bed and I just move my problem foot and I hear a huge "crack". Is this another new symtom that won't go away just like the tingling , numbness and everything else that I have been experiencing?

I swear I am.not making any of this up. It's really worrying me. It started with the little toe feeling funny when I was running to my toes going numb when I was running. Then later it happens when I was just walking around and shortly after it because permanent. Something that I have been dealing with all day long , non stop. Then my foot started popping and my other joints as well and it doesn't seem like it's going away 

What is keeping my spirits up is that you and other members on this board have reassured me that the numbing and tingling, etc. Is not a sign of ALS. That is what has given me some hope.

I just wished my symtoms were only twitching like they used to be. But, all this other scary symtoms are showing up all of a sudden and getting progressively worse and it has taken a toll on me. 

 

If this is not ALS, then what is happening to me? Why am I not improving? Why do I have all this symtoms that seem to be connected? I don't know, unfortunately I think it will take sometime to get the answers. I just hope my body doesn't keep breaking down. It seems that every week is something new, with no going back. SMH

This time I haven't googled joints popping non stop because I don't want to freak out anymore. Is this a sign of muscle weakness? Or the beggining stage of muscle wasting? It seems very odd that most of it it's happening on that foot that looks skinnier than the other.

I don't know guys this is very defeating . I go to sleep every night praying to wake up the next morning and see some symtoms go away. I just want to see some type of improvement. When.this first started it was on.and.off. I would have it for a few days and then it would go away . Now it's constant, I really don't get it

Another symtom that I have been noticing for the last couple of months , but haven't really paid mind to. Is a lot of times when I am sleeping and wake up all of a sudden in the middle of the night. My leg jerks. I don't think this happens any other time during the day. But when I am sleeping and suddenly wake up it happens. It mostly happens when I am still asleep because I notice it right at the end  

Something is definitely going on, I just hope that this is a case of some type of neuropathy , or small fiber condition , etc. Something that would be manageable and not life altering.

Thank You guys once again 

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5 hours ago, Cubanborn87 said:

Thanks for sharing your story with me. I definitely want to get better and I understand that I need to. But, the issue for me is. Why is there so much stuff going on at once and it doesn't go away? It seems too coencidental. I see now improvement at all, right now I just woke up. I am still in bed and I just move my problem foot and I hear a huge "crack". Is this another new symtom that won't go away just like the tingling , numbness and everything else that I have been experiencing?

I swear I am.not making any of this up. It's really worrying me. It started with the little toe feeling funny when I was running to my toes going numb when I was running. Then later it happens when I was just walking around and shortly after it because permanent. Something that I have been dealing with all day long , non stop. Then my foot started popping and my other joints as well and it doesn't seem like it's going away 

What is keeping my spirits up is that you and other members on this board have reassured me that the numbing and tingling, etc. Is not a sign of ALS. That is what has given me some hope.

I just wished my symtoms were only twitching like they used to be. But, all this other scary symtoms are showing up all of a sudden and getting progressively worse and it has taken a toll on me. 

 

If this is not ALS, then what is happening to me? Why am I not improving? Why do I have all this symtoms that seem to be connected? I don't know, unfortunately I think it will take sometime to get the answers. I just hope my body doesn't keep breaking down. It seems that every week is something new, with no going back. SMH

This time I haven't googled joints popping non stop because I don't want to freak out anymore. Is this a sign of muscle weakness? Or the beggining stage of muscle wasting? It seems very odd that most of it it's happening on that foot that looks skinnier than the other.

I don't know guys this is very defeating . I go to sleep every night praying to wake up the next morning and see some symtoms go away. I just want to see some type of improvement. When.this first started it was on.and.off. I would have it for a few days and then it would go away . Now it's constant, I really don't get it

Another symtom that I have been noticing for the last couple of months , but haven't really paid mind to. Is a lot of times when I am sleeping and wake up all of a sudden in the middle of the night. My leg jerks. I don't think this happens any other time during the day. But when I am sleeping and suddenly wake up it happens. It mostly happens when I am still asleep because I notice it right at the end  

Something is definitely going on, I just hope that this is a case of some type of neuropathy , or small fiber condition , etc. Something that would be manageable and not life altering.

Thank You guys once again 

You said what comforts you is someone on the board says als isn't numbness or tingling.  Most importantly your DR said that too!!!! 

Cracking mesns nothing. 

Something is going on..it's called anxiety. Your body is pumping with adrenaline.. where do you think all that energy is supposed to go? :(

I feel that no matter we say or what your Dr says it's in one ear and out the other. . and you are right back to your worries. You won't get better this way. You will not get better until you try. Do something for anxiety today. Watch anxiety guy.. go for a long long walk. Do something. 

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13 minutes ago, Holls said:

You said what comforts you is someone on the board says als isn't numbness or tingling.  Most importantly your DR said that too!!!! 

Cracking mesns nothing. 

Something is going on..it's called anxiety. Your body is pumping with adrenaline.. where do you think all that energy is supposed to go? :(

I feel that no matter we say or what your Dr says it's in one ear and out the other. . and you are right back to your worries. You won't get better this way. You will not get better until you try. Do something for anxiety today. Watch anxiety guy.. go for a long long walk. Do something. 

I have been trying to stay busy, but it's not really helping . What you guys have told me and what the doctor said has helped me some. 

I just hope when I take the EMG, if it comes back clean. It will offer me some peace or an opportunity to move on from this episode that I am having 

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Well, I was in that same position a while ago. Nothing a doctor, a friend or people on this forum said made sense because I was in the grips of anxiety and the physical symptoms were so strong. 

Be assured Cubanborn it takes time. You can't force yourself to get better but we also don't want to see you going down further (like I did when my anxiety was not treated). You have to decide when the time is right and reach out for help and slowly show anxiety you are in control of your destiny. I strongly believe you can do this when ready and paired up with the right professional.

My best Wishes. 

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22 minutes ago, MsLLL said:

Well, I was in that same position a while ago. Nothing a doctor, a friend or people on this forum said made sense because I was in the grips of anxiety and the physical symptoms were so strong. 

Be assured Cubanborn it takes time. You can't force yourself to get better but we also don't want to see you going down further (like I did when my anxiety was not treated). You have to decide when the time is right and reach out for help and slowly show anxiety you are in control of your destiny. I strongly believe you can do this when ready and paired up with the right professional.

My best Wishes. 

Yes, I agree with you. My anxiety is definitely an issue and I will have to start working on it with a professional. I promised to myself that I will do just that. I just feel like there is so much going wrong with my body right now, that I feel like there is definitely something wrong with me. I am just praying that this is just anxiety and nothing else. 

 

I'll have to get this tests out of the way first and see where it leads. Hopefully everything will come back ok and then I can start moving on from my anxiety issues with help.

 

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We’ve all been there! There was a period of 4 months where I knew something was seriously wrong with me. I got constant headaches, threw up every morning.. like I would literally open my eyes and run straight  to bathroom to vomit, I had constant aches and pains, I lost 10 pounds in like 2 weeks, heart palpitations, chest pains, neck pain/stiffness. So many many many things that I’m forgetting. I saw so many doctors and they all just said anxiety. It took close to 5 months for me to feel better. I still get a lot of health anxiety here and there when I have weird symptoms and I’m really trying to stop thinking that way but I just can’t help it. I think we all have some trigger that started all of this. For me it was my mom’s health scare with cervical cancer. Thankful it was just a polyp and she’s fine but ever since then I’ve been having health anxiety problems. It all started bc I was googling different things about cervical cancer and treatments and symptoms that became a cycle for me. Another time I was fully convinced I had ALS or MS (still think I have MS sometimes bc of all my aches and pains). The problem with health anxiety is that you FULLY believe there’s something wrong bc the symptoms are completely real. Just not what we think they are. I hope you can get through this and look back like the rest of us are now and realize how ridiculous you’re being. I know that in the moment it’s extemely scary and lonely, but I promise it gets better! This site has helped me realize that I’m not alone and you can see that 99% of things we think we have we’re wrong about. 

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I am really trying to be hopeful, but it's hard. 

The night is the worst time, because when I am in bed is where I feel all the symtoms that I had never felt before. Last night was extremely rough for me , the symtoms were all over the place and I don't remember having these symtoms in the past at all

- Tingling in my left foot and leg

- My left hand going numb while I sleep

-My legs and arms jerking while I sleep (Is this an ALS symtom?). It actually wakes me up each time.

-As soon as I get up from bed  a huge "crack" from my left foot

-Obviously the twitching as well

-my arms also feeling weak throughout the day 

I just sit there at night and say to myself what in the world is going on? Why aren't these symtoms going away? Why I don't see any improvement? Its like it convinces me that I have ALS. It's such a helpless feeling.

To think that my test is in late January or am still 3 and a half weeks left from finding out if something is wrong with me or not. I feel helpless, I just want at least 1 symtom to go away . Or have a day or few days where I don't feel any of them. Show me that it's not just going from bad to worse. But, no. That is never the case which really makes me worry.

 

 

 

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4 hours ago, Cubanborn87 said:

I am really trying to be hopeful, but it's hard. 

The night is the worst time, because when I am in bed is where I feel all the symtoms that I had never felt before. Last night was extremely rough for me , the symtoms were all over the place and I don't remember having these symtoms in the past at all

- Tingling in my left foot and leg

- My left hand going numb while I sleep

-My legs and arms jerking while I sleep (Is this an ALS symtom?). It actually wakes me up each time.

-As soon as I get up from bed  a huge "crack" from my left foot

-Obviously the twitching as well

-my arms also feeling weak throughout the day 

I just sit there at night and say to myself what in the world is going on? Why aren't these symtoms going away? Why I don't see any improvement? Its like it convinces me that I have ALS. It's such a helpless feeling.

To think that my test is in late January or am still 3 and a half weeks left from finding out if something is wrong with me or not. I feel helpless, I just want at least 1 symtom to go away . Or have a day or few days where I don't feel any of them. Show me that it's not just going from bad to worse. But, no. That is never the case which really makes me worry.

 

 

 

I had everything on your list and vibrated too. The jerking at night really would get me. I asked my Dr about it and she called it something.. I won't Google to find out Bec I no longer Google but she said that's anxiety related and she said I had to get ahold of it.. and she told me to start walking to burn off the adrenaline and cortisol. I've said this before, your symptoms will not just poof go away in one day. You have NOT calmed your mind yet .once your mind gets calm your body will follow . 

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There’s nothing that anyone can do for you. It’s all up to you. I know that it sounds harsh, but you keep posting on this site looking for something that we cannot provide.

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18 minutes ago, clearhead said:

There’s nothing that anyone can do for you. It’s all up to you. I know that it sounds harsh, but you keep posting on this site looking for something that we cannot provide.

That's so true. I kept leaning on my husband when I had bad anxiety and it helped until he had to go to work then I was a mess.. it really was up to me . When I found this site I would email Gilly...poor thing lol I asked her the same things over and over trying to get reasurrance but it was always short lived. I finally found journaling and walking and anxiety you tube videos helped.. 

Clesrhead, what helped you? And do you find yourself not really getting triggered by the als posts but noticing your body again? I'm starting to focus on my left leg. And I hate that my mind is so easy influenced. I'm going to back of the site again but just wondering if you have that problem as well. Hugs!!

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29 minutes ago, Holls said:

I had everything on your list and vibrated too. The jerking at night really would get me. I asked my Dr about it and she called it something.. I won't Google to find out Bec I no longer Google but she said that's anxiety related and she said I had to get ahold of it.. and she told me to start walking to burn off the adrenaline and cortisol. I've said this before, your symptoms will not just poof go away in one day. You have NOT calmed your mind yet .once your mind gets calm your body will follow . 

Wow, so the leg / arm jerking while sleeping is something that you have experienced too? Ok, well at least that's something . Thanks for responding I know I must be driving everyone crazy by now. It's just so frustrating feeling all these symtoms. 

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Just now, Cubanborn87 said:

Wow, so the leg / arm jerking while sleeping is something that you have experienced too? Ok, well at least that's something . Thanks for responding I know I must be driving everyone crazy by now. It's just so frustrating feeling all these symtoms. 

Your not driving anyone crazy. I wish I could find my old emails that I sent a woman on the forum from when I was having als anxiety.. we could be twins!!!!! And it was all my left leg too. Yesss I hated the jerks. As soon as I would fall asleep I would get a jolt usually in my gut. Once my Dr said they aren't anything sinister I calmed down and they stopped. When we had the hurricane come 2yrs ago I was so stressed I had them again for a week..

Hugs. Talk out your fears. You got this. 

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Staying busy is not the same as actively doing something to reduce your anxiety like exercise, meditation, practicing acceptance, telling your anxiety NO, it’s not ALS. Staying busy can help in the short term but I find my anxiety comes back the minute I slow down. You can run on full speed all the time so do something that can help burn off some of that adrenaline. You are still very anxious about all the sensations you are having and they will not go away on their own, you have to work at it. Continually seeking reassurance for every sensation you are having is just adding fuel to the fire of anxiety. The what if’s have to stop. When you think “but what if” tell out loud “Stop! No! It’s just anxiety.” As many times as you need to. Talk to your anxiety and let it know that you don’t believe the lies it’s telling you. Sounds crazy but after a while it will work! 

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30 minutes ago, Iugrad91 said:

Staying busy is not the same as actively doing something to reduce your anxiety like exercise, meditation, practicing acceptance, telling your anxiety NO, it’s not ALS. Staying busy can help in the short term but I find my anxiety comes back the minute I slow down. You can run on full speed all the time so do something that can help burn off some of that adrenaline. You are still very anxious about all the sensations you are having and they will not go away on their own, you have to work at it. Continually seeking reassurance for every sensation you are having is just adding fuel to the fire of anxiety. The what if’s have to stop. When you think “but what if” tell out loud “Stop! No! It’s just anxiety.” As many times as you need to. Talk to your anxiety and let it know that you don’t believe the lies it’s telling you. Sounds crazy but after a while it will work! 

Thanks, that's great advice. I am truly hoping they can move my EMG up. I am hoping there is a cancellation soon.

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31 minutes ago, Iugrad91 said:

Staying busy is not the same as actively doing something to reduce your anxiety like exercise, meditation, practicing acceptance, telling your anxiety NO, it’s not ALS. Staying busy can help in the short term but I find my anxiety comes back the minute I slow down. You can run on full speed all the time so do something that can help burn off some of that adrenaline. You are still very anxious about all the sensations you are having and they will not go away on their own, you have to work at it. Continually seeking reassurance for every sensation you are having is just adding fuel to the fire of anxiety. The what if’s have to stop. When you think “but what if” tell out loud “Stop! No! It’s just anxiety.” As many times as you need to. Talk to your anxiety and let it know that you don’t believe the lies it’s telling you. Sounds crazy but after a while it will work! 

Lately I also been feeling weakness on the left side specifically. This is the problem side, where I have been experiencing lately. At first I thought it was mostly the numbness and tingling that was causing it. To some extent it might have been, but even know that the tingling has been greatly reduced. I feel some weakness, sometimes is the hand or arm. Sometimes it's the leg mostly concentrates in the thigh. It's hard for me to say how real these symptoms are as well, but it is something that I had started to notice lately. 

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