Please advise - anyone with ALS knowledge

[Panic Mode10 6]

 

 

 

 

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[davide.h 26]

What do you want to know?

This website might help. 

http://www.alsa.org/about-als/what-is-als.html

[Panic Mode10 6]

I’m so consumed with fear that I have ALS! I’ve been on the ALS forum- they were so kind to me but asked me to leave. I feel like a selfish jerk for being there in the first place. But, I truly think I have ALS. I’ve had foot pain, calf pain, abdominal pain, spasms and twitching for a year. No other problems that I know of except I feel the top of my abdominal muscles have atrophied. 
 

I want to see a neurologist but I don’t know when- my Dr. referred me. I’m also scared to go. I feel I might die. This has taken all my joy. 

[Iugrad91 501]

Pain is not a symptom of ALS. Listen to what Holls said on the other thread. She is the resident expert and wants to spare you from suffering. Anxiety is hard on the digestive system and I’ve had abdominal cramping and spasms that are stress related.

[Holls 1505]

Thanks @Iugrad91

Als worries are hard to break. The ALS forum is toxic. I promise. You think it will help but it hurts. You really have to stop going there. If the people on the ALS forum says no and to go away.. listen!!!!!!!!!!! They know what they are talking about. You have zero symptoms. I had a sweet yet firm man on the ALS forum tell me he wished Google wouldn't put twitching as a listed symptom he said it should be paralysis only. 

You have to get your mind on something else. It's hard but that's how I recovered. My husband actually took WiFi off my phone so I couldn't Google and boy did that help! I read books I enjoyed to keep my mind busy and I walked twice a day and rode bikes to keep my mind clear. Try a week cleanse from Google.

Hugs. This worry will ease. But you have to work at it. 

[Panic Mode10 6]

I’m so consumed with fear that I have ALS! I’ve been on the ALS forum- they were so kind to me but asked me to leave. I feel like a selfish jerk for being there in the first place. But, I truly think I have ALS. I’ve had foot pain, calf pain, abdominal pain, spasms and twitching for a year. No other problems that I know of except I feel the top of my abdominal muscles have atrophied. 
 

I want to see a neurologist but I don’t know when- my Dr. referred me. I’m also scared to go. I feel I might die. This has taken all my joy. 

[Panic Mode10 6]

Thank you so much. I’m not going back to those sights. The more I learn the deeper the hole becomes. I took myself off the email list. Anxiety is the worst. It’s stolen so many good days from me, but I’m determined to start living without this dark cloud again. 

❤️

[Panic Mode10 6]

4 hours ago, Iugrad91 said:

Pain is not a symptom of ALS. Listen to what Holls said on the other thread. She is the resident expert and wants to spare you from suffering. Anxiety is hard on the digestive system and I’ve had abdominal cramping and spasms that are stress related.

I hope you’re doing much better! I appreciate your time and advice. I’m trying and will overcome this. No more ALS forums. I’m focused on prayer and healthy lifestyle choices.

 

❤️

[Holls 1505]

50 minutes ago, Panic Mode10 said:

Thank you so much. I’m not going back to those sights. The more I learn the deeper the hole becomes. I took myself off the email list. Anxiety is the worst. It’s stolen so many good days from me, but I’m determined to start living without this dark cloud again. 

❤️

Yes the more I learned the more I had those symptoms too! I had pain and a weak wrist when my trouble started.. I googled. Boom, "weak" brought up als. I read it and read twitches... Later that night after almost fainting Bec I had convinced myself the weakness was the ALS type.. I started twitching in my calves and I've never twicthed before so boom i def have als. And then I started over focusing on my gait and caused my leg to over work themselves and my thigh started buzzing from tension and over analyzing. It was the hardest time in my life. I was mentally absent from my kids birthdays, Easter, summer vacation.. I wanted to tell you more of my story so you can see some.of yourself in it too. I also lost 15 pounds in two weeks and had stomach twitches. Soooo. Sound familiar? Biggest of the biggest hugs. Keep talking out your fears here, it helps. !!! 

[Panic Mode10 6]

I’m so sorry you had to experience what you did. Thank you for the thoughtful responses you’ve given me. 
 

I can remember probably 1.5 to 2 yrs ago that my foot hurt so badly that I felt I could barely take it. I seriously thought I had an injury from my workout class, so I just pressed on. The foot issues got better after months,  then my calf became affected on the same side of my body. In your opinion, would I be seeing more symptoms of ALS by now? 
 

So engulfed right now and no apt with neurologist yet. 
 

 

[Holls 1505]

1 hour ago, Panic Mode10 said:

I’m so sorry you had to experience what you did. Thank you for the thoughtful responses you’ve given me. 
 

I can remember probably 1.5 to 2 yrs ago that my foot hurt so badly that I felt I could barely take it. I seriously thought I had an injury from my workout class, so I just pressed on. The foot issues got better after months,  then my calf became affected on the same side of my body. In your opinion, would I be seeing more symptoms of ALS by now? 
 

So engulfed right now and no apt with neurologist yet. 
 

 

Pain doesn't go with ALS. At all. So what your experienced with your foot was never an als symptom. Same goes for your calf and even your twitches. 

In als, deterioration is fast... You wouldn't be able to walk. It's that simple. It doesn't just hang out for a year and not do anything. The progression never stops. Your foot would never have gotten the slightest better.. 

I'm not trying to be rude but you need to understand that you don't understand ALS. You aren't seeing it rationally at all. I understand Bec I did the same. 

The biggest thing I can tell you is . I know you don't have it but the men and women on the ALS forum asked you kindly to leave. It wasn't Bec you forgot to mention this or that... that's what I did, I went to that site and was sent away.. I wasn't relieved. I was worried I didn't word it correctly.  😞

Sorry you are having these thoughts. Gilly here on the forum told me something that possible saved me, she said Everytime you have a thought that says that's als say to yourself als nope, anxiety yes. The first three days I said it a million times Bec that's how often the thoughts were coming in... But eventually my thoughts slowed Bec I refused to act on them. I stopped them in their tracks. You have to tell your mind no..... Als nope,  anxiety YES!

[Panic Mode10 6]

Thank you for the response. I’m literally in a hole. Your words have helped me so much. I felt the same on the ALS site thinking maybe I hadn’t explained my symptoms correctly. Maybe it wasn’t pain / maybe just spasms and my mind said pain. Ugh. I’m trying so hard. I’m re-reading your responses to refer back to. 
 

Thank you. ❤️

[MARC 429]

I know of 3 people who had ALS. The first was a man who just turned 71. His symptom was slurred speech. Initially they thought he had a stroke, but it was ALS. The second was a man who was around 50. He was a weight lifter and physical fitness enthusiast. He suddenly one day could not open a twist jar. His strength declined quickly. The third was a woman around 65. She was at a bus stop waiting for a bus when she suddenly could not stand anymore and fell to the ground and had trouble getting up. 

 

 

 

[jonathan123 2367]

Thank Marc. I am sure that has helped everyone with ALS fears. That was about all they needed. We posted recently about words and the damage they can do to susceptible people. Suggestion is a source of real concern in Health anxiety. If we can't say something positive best not say anything.

[MARC 429]

Whenever I can, I try to tell my actual experiences. I myself have had a number of actual problems, which include a fractured vertebrae, basal cell carcinoma, esophageal ulcer, rectal bleeding which was hemorrhoids, dizziness every day for 6 weeks which was due to crystals shifting in my ears, diverticulosis, umbilical hernia and an eye disease. I believe in the old saying, knowledge is power. 

[Panic Mode10 6]

On 5/6/2020 at 9:23 PM, MARC said:

I know of 3 people who had ALS. The first was a man who just turned 71. His symptom was slurred speech. Initially they thought he had a stroke, but it was ALS. The second was a man who was around 50. He was a weight lifter and physical fitness enthusiast. He suddenly one day could not open a twist jar. His strength declined quickly. The third was a woman around 65. She was at a bus stop waiting for a bus when she suddenly could not stand anymore and fell to the ground and had trouble getting up. 

 

 

 

Thank you for reaching out. So sorry for the people you mentioned. I’m caught in this heck of a place consumed with my anxiety. I have good days where I’m back to myself and then I have bad days where I wake up with calf spasms, funny numb sensations and twitching that sucks me back down the ALS rabbit hole. I need to have an EMG but I’m absolutely petrified. What’s worse is the neurologist’s office is 3 to 4 weeks out from scheduling appointments and I’m deathly afraid to schedule. I pray daily to be healthy but something is really wrong with my body. I don’t know how much longer I can take it. I still walk for exercise and lift weights a few times a week, but the symptoms I have are concerning. I’ve kept an open mind thinking the ailments I feel could be IBS, a pinched nerve or a million other things, but I can’t stop thinking it’s really ALS and one day I’ll wake up and not be able to move. 
 

🥺🥺🥺

[Panic Mode10 6]

On 5/7/2020 at 4:28 AM, jonathan123 said:

Thank Marc. I am sure that has helped everyone with ALS fears. That was about all they needed. We posted recently about words and the damage they can do to susceptible people. Suggestion is a source of real concern in Health anxiety. If we can't say something positive best not say anything.

I agree. His response did  freak me out a little.  I’m trying so hard to feel good, but I really do have something physically wrong with me. I’m normally positive, upbeat and happy, but I can’t deny my real physical symptoms. They’ve been constant for a year now. 🥺🥺

[Rosie206 4]

What are the feelings you are having? I also suffer with this fear. Having had my uncle pass away from this illness and a friends father, it has been a fear that has stayed with me. It started more than a year ago with me feeling weakness in my right arm. My long term relationship had just ended and I was trying to juggle college and work. It’s a battle every day to try and quench these ALS thoughts and I hope that some day I can get my spark back without the fear of this tragic illness.

[MARC 429]

ALS is a progressive disease and you would have gotten much worse in a years time, so odds are you don't have ALS. 

[MARC 429]

Try also to remember that ALS is a pretty rare disease and there are not that many cases diagnosed each year. 

[Holls 1505]

6 hours ago, Panic Mode10 said:

Thank you for reaching out. So sorry for the people you mentioned. I’m caught in this heck of a place consumed with my anxiety. I have good days where I’m back to myself and then I have bad days where I wake up with calf spasms, funny numb sensations and twitching that sucks me back down the ALS rabbit hole. I need to have an EMG but I’m absolutely petrified. What’s worse is the neurologist’s office is 3 to 4 weeks out from scheduling appointments and I’m deathly afraid to schedule. I pray daily to be healthy but something is really wrong with my body. I don’t know how much longer I can take it. I still walk for exercise and lift weights a few times a week, but the symptoms I have are concerning. I’ve kept an open mind thinking the ailments I feel could be IBS, a pinched nerve or a million other things, but I can’t stop thinking it’s really ALS and one day I’ll wake up and not be able to move. 
 

🥺🥺🥺

Anxiety can cause everything you mentioned. When I was told that, I would always say but no I feel my symptoms... anxiety does cause real symptoms. You are constantly anxious about this... You are walking, lifting weights... You are strong. You do not have ALS. Please don't live like you do... Live your life. Please put this worry away. I know it's hard but it won't stop until you tell your mind no because your mind is the one running the show right now. The irrational thoughts have taken over. Don't let it. 

[Holls 1505]

4 hours ago, Rosie206 said:

What are the feelings you are having? I also suffer with this fear. Having had my uncle pass away from this illness and a friends father, it has been a fear that has stayed with me. It started more than a year ago with me feeling weakness in my right arm. My long term relationship had just ended and I was trying to juggle college and work. It’s a battle every day to try and quench these ALS thoughts and I hope that some day I can get my spark back without the fear of this tragic illness.

Feeling is not an als symptom..I felt weak in my thigh but feeling weak and being clinically weak are polar opposite..hugs. you are triggered by a fear Bec you know of this disease close up. It's an extremely.rare disease. When I was in the thick of my worry and I was told that it didn't help but now that I'm more rational the statistics really show how rare it is. Hugs. 

[Rosie206 4]

Thanks everybody for your replies. I’m baffled at how many other people feel this way and it’s always so helpful to hear about how someone else managed to move on from their fears of this. Some days I can be rational and tell myself I’m perfectly fine, but other days I’m consumed by these thoughts. I try to test my strength constantly with my right arm in comparison to my left. Just last night I felt so worried as it looks as if my right arm is actually thinner than my left although I use this arm to write etc. I’ve had nerve conduction studies, MRI, EMG and bloods to which all have come back all clear, which I am so thankful for. I just don’t know how I can move on and put these awful thoughts behind me. I was taking medication for anxiety but didn’t feel they helped me in any way and I just want more than anything to fight this myself without the use of medication. What tips did you find helped you to get your mental strength back and fight these negative thoughts/feelings? 

[Panic Mode10 6]

15 hours ago, Holls said:

Anxiety can cause everything you mentioned. When I was told that, I would always say but no I feel my symptoms... anxiety does cause real symptoms. You are constantly anxious about this... You are walking, lifting weights... You are strong. You do not have ALS. Please don't live like you do... Live your life. Please put this worry away. I know it's hard but it won't stop until you tell your mind no because your mind is the one running the show right now. The irrational thoughts have taken over. Don't let it. 

Thank you for the helping me. I hope I can do the same for someone one day. Bless you! ❤️

[Panic Mode10 6]

On 5/12/2020 at 1:55 PM, Panic Mode10 said:

Thank you for the helping me. I hope I can do the same for someone one day. Bless you! ❤️

I’m back. I’m in the deepest hole I’ve ever been in with constant ALS fears. I know something is seriously wrong with me. I had a referral to a neurologist and they called to inform me that they do not accept my insurance. The twitches can be barely noticeable some days then come back with a vengeance.
 

The other night I a lot of alcohol, something I had mostly given up thinking that’s what was causing my calf pain/tightness and twitching. The day after drinking excessively I was twitching like crazy and believe I had a panic attack. 

I feel like my abdomen has atrophied and I have a dent in my upper calf. I’m sooooo stressed over all of this. The symptoms of calf / abdominal spasms / tightness started a 13 months ago. I’m not sure when the twitches started as I didn’t record them until I searched my symptoms and realized I had them (that was probably 3 months ago.) I will say my calf spasms, tightness as well as abdominal issues are much better... That scares me because I’ve read in ALS, the spasms go away, then the twitches start.  Also, my left upper arm feels like I have some kind of shock like / frozen/ painful sensation that comes and goes. It’s quite scary.

I have a new job that’s extremely intense. I don’t begin until next Thursday. I’m so afraid I won’t be able to perform well. 
 

Any advice is welcomed. I appreciate everyone here so much. 
 

🥺😥