Bulbar ALS or just HA?

[Goldfishyo]

Hello there,

I hope that I am posting this in the right place. I am a newcomer, so I apologize in advance if this is not where this belongs!

Recently I have had this constant fear that something is wrong with me. I've always dealt with panic attacks and anxiety but have been able to manage them without therapy or medication. However, I've gone through quite a few life changes/stressors in the past 6 months and my panic attacks and anxiety feel like they're at an all-time high. For example, I would occasionally start to feel lightheaded, increased heart rate, and get nervous that I was about to pass out. This happened a few times a week, often when I was driving, and I started to worry I had a heart problem. It has since stopped but happens occasionally out of nowhere. The next big thing is that I've always been super sensitive about symptoms and worried about my health but it usually goes away in a few days. But about 4 weeks ago, my mind got stuck on ALS and I can't seem to get it off.

It all started when I felt like I was tripping more than usual. I noticed it only really happens when I'm at work (we have pretty non-scuff floors) but for whatever reason, I worried it was foot drop and the idea of ALS popped into my head (I'm a health care professional so I know way too much medical information, ugh). I then started thinking about the fact that sometimes I feel like I have trouble swallowing, and started freaking out. I told myself I don't fit the demographic for ALS (under 30, female, no family history, etc.) and even spoke with someone who has done their PhD research in ALS and they weren't concerned. However, they told me to look into CBT and see a specialist to ease my concerns.

That reassurance helped for about a week but I continued to search online for reassurance. The more I read on the internet (yeah I know), the worse I felt. I started feeling muscle twitches all over my body and feeling like I was weak. The weakness was always inconsistent, going from my right leg to my left hand to my trunk and so on. But the twitches were relentless. I scheduled a Drs appt with my PCP and started working on ways to manage my anxiety with the hope that that was the culprit for all of this. I have been trying to exercise more, have cut out caffeine, and been doing guided relaxation and meditation.

The twitching is about 90% gone and I no longer feel like I'm weak all the time. I do now, however, have excessive saliva and swallowing, which has been going on for several days. I keep telling myself its reflux, but I have never been told I have it by my Dr. I have experienced more heartburn, burping, and regurgitation lately so it lines up. But I'm just so worried about this excess saliva. Is it possible that it increases the more I think about it? I seem to really only notice it when I'm inactive and not engaged in work but have noticed it when I'm talking to others. I also tend to feel like I'm having a hard time swallowing but that's also usually only when I fixate on it.

Has anyone else experienced this? How did you present this to your Dr? I'm going to see them tomorrow and hopeful that my concerns aren't dismissed. I am almost positive that a lot of this is caused by anxiety but I want to do my due diligence and make sure my health is in check.

Sorry for the long post. I appreciate any advice anyone can give. Thank you.

[Fishmanpa]

The ALS rabbit hole is a deep one. There are many threads about it here. Best advice is in this thread.

Positive thoughts

[Goldfishyo]

Thank you for that. I actually read your thread a week or so ago and it brought a LOT of relief. But I still can't stop the worrying. I think it's the new saliva issue. Everything I've read always list ALS as a cause (which is crazy considering how rare it is). But not having an explanation for this saliva thing is the worst.

[HelloPanda23]

Thank you for that. I actually read your thread a week or so ago and it brought a LOT of relief. But I still can't stop the worrying. I think it's the new saliva issue. Everything I've read always list ALS as a cause (which is crazy considering how rare it is). But not having an explanation for this saliva thing is the worst.

Can you whistle? Do you have slurred speech that never gets better no matter how hard you try? Can you stick your tongue out and move it up and down very quickly? If the answers to these questions are yes, no, yes, then you don't have bulbar onset. Excess saliva only occurs in ALS when the tongue gets atrophied and is practically not useable. You're not in that situation, so why worry? ALS is a scary disease, but not the scariest I've gone through, mentally, ofc. Think of it this way, if you get ALS, you still have many months or maybe years of life. You can be with your family and have a good time. I made the mistake of browsing through the ALS forums when i was having a lot of stress over the disease, and many people said that their lives were better upon recieving ALS than before. Maybe becuase before they had worries over their jobs and all they cared for was making a living, but after realizing they were going to die, they look more positively at things and enjoyed themselves. Sure, it sucks getting ALS, but there is nothing you can do, so look st the positives. It's the only way I've beat my fear of ALS, and of my new fear, SFI. I still got GAD, but I don't think I got HA anymore. Time will tell I guess, oh and, when I had my fear, I'd obsess over ALS but I had no symptoms. It goes to show thst HA is powerful.