Another exhausted fool for ALS

[mindyanajones]

I see just a few posts below this one there's another unfortunate soul in the ALS rabbit hole. I'm glad this forum exists, if only for the group therapy like approach it has to being able to talk to people who are going through the same crap you are, but it's saddening to see how many of us are here.

I don't know that I'm really looking for reassurance. I know that's not what's healthy. I've started therapy. My PCP has me on an anti-anxiety med which... so far clearly doesn't really seem to be working that well since I'm still here. I went to her a month ago complaining of a feeling of muscle weakness that had started in my left arm and hand and had seemingly just spread to my entire left side with muscle twitching all over starting the day after I noticed the weakness. She did a neuro exam, checking muscle strength and patellar reflexes, and deemed me perfectly fine, that because I wasn't slurring my words or stumbling that I didn't have ALS. She had a brother-in-law who had the disease and I didn't present anything like it.

If only that had settled it. I was mostly able to relax for a couple weeks, though none of the symptoms I had have ever went away. I still have twitching. My left hand, specifically my thumb and pointer finger still feel weird, like they don't work right. When I wake up in the morning I feel shakey and weak, especially in my left hand and like there's a buzzing feeling through my whole body. I constantly feel like I need to stretch. My entire left side feels like jelly sometimes, and my left leg and foot don't feel normal when I walk. I still feel like I'm having almost imperceptible tremors (my front teeth chatter every so slightly.)

But now my recent freak out tonight is that I feel like my swallowing is impaired. I'm not choking. I'm not gagging, but when I eat it feels like the food slips down into my throat faster than it should. My throat feels weak and like jello. And I'm trying not to convince myself that I'm losing my voice or that it sounds weaker. Essentially, I don't feel my baseline normal.

My body doesn't feel like my own, anymore, and I'm exhausted of this. I'm so sick of being scared. I'm a nursing student who's going to be graduating in a month, and I feel like I can't even enjoy it because I keep thinking about how I'm going to die and won't be able to be a nurse for very long, that my mother will be stuck taking care of another sick family member.

How do you guys deal with the flare ups of "symptoms"? How do you convince yourself that it's all just in your head? I've suffered with anxiety for years, now, and it's never been bad enough that I've developed symptoms like this. Chest tightness, sure. A jittery feeling, sure. Heart racing, absolutely. But stuff like this? Never. Not until a month ago. It just boggles my mind that this is just -- my mind. How can it just continue for months even though you know that it's just anxiety?

[Pmrr]

Sounds like we are having a very similar experience at the minute. I’m not coping very well and don’t really know what to do. I’m starting CBT again soon so hopefully that helps.

[Josh1234]

You can't feel weakness. It's not a sensation.

[mindyanajones]

Sounds like we are having a very similar experience at the minute. I’m not coping very well and don’t really know what to do. I’m starting CBT again soon so hopefully that helps.

I'm sorry you're dealing with it, too. In all likelihood, we're probably completely fine. We're both 30, and it VERY RARELY affects people our age. In an already rare disease, that's even more rare. It's just trying to convince our brains to believe it that's the difficult part, and I totally understand that.

[Fishmanpa]

PLEASE READ THIS (http://www.nomorepanic.co.uk/showthread.php?t=196071) as many times as you need to.

Positive thoughts

[mindyanajones]

Thank you for the link, Fishmanpa. I actually did see it not long after I wrote this post, and it did help quite a bit.

[tjb113]

Welcome to the club; you'll find we're not a very exclusive one. Sadly the fear of ALS is one that is very prevalent among sufferers of health anxiety. In fact, it is generally believed that the fear of the disease is more prevalent than the disease itself. This is particularly the case since BFS, a rather common condition, also presents with muscle twitching.

As someone who has been floundering in this rabbit hole for 2 years now I can definitely sympathize. For me it was some muscle pain in my arm, back and shoulder accompanied by frequent twitching. Of course I made the mistake of checking with Doctor Google and the search results started me digging a hole I still struggle with 2 years later.

I even went through situations similar to you. Times when for weeks I was sure I wasn't swallowing right, or that my arm or leg was growing weaker. I even started comparing muscle tone on one side to the other and noticed every little difference. In the end though it has now been 2 years and while I still get twitching that freaks me out, I haven't gotten weaker and the swallowing or breathing problems I was convinced were there have come and gone (likely anxiety).

I definitely understand though, it's a terrible disease that can present in a number of different ways and since it can't easily be tested for the fear of it is particularly hard to defeat. Heck, there are times even now when I get a particularly twitchy hot spot that the fear can come roaring back. It's a tough one to face, but as you mentioned, many of us here have dealt with this fear but it never seems to develop past being just that; a fear.

[mindyanajones]

Welcome to the club; you'll find we're not a very exclusive one. Sadly the fear of ALS is one that is very prevalent among sufferers of health anxiety. In fact, it is generally believed that the fear of the disease is more prevalent than the disease itself. This is particularly the case since BFS, a rather common condition, also presents with muscle twitching.

As someone who has been floundering in this rabbit hole for 2 years now I can definitely sympathize. For me it was some muscle pain in my arm, back and shoulder accompanied by frequent twitching. Of course I made the mistake of checking with Doctor Google and the search results started me digging a hole I still struggle with 2 years later.

I even went through situations similar to you. Times when for weeks I was sure I wasn't swallowing right, or that my arm or leg was growing weaker. I even started comparing muscle tone on one side to the other and noticed every little difference. In the end though it has now been 2 years and while I still get twitching that freaks me out, I haven't gotten weaker and the swallowing or breathing problems I was convinced were there have come and gone (likely anxiety).

I definitely understand though, it's a terrible disease that can present in a number of different ways and since it can't easily be tested for the fear of it is particularly hard to defeat. Heck, there are times even now when I get a particularly twitchy hot spot that the fear can come roaring back. It's a tough one to face, but as you mentioned, many of us here have dealt with this fear but it never seems to develop past being just that; a fear.

I'm so sorry you've been dealing with this for two years. I think that scares me, too. I don't want this to take over my life to the point that this is what I focus on for years. I had a bad day today, panic attack and crying at school, and a classmate told me her sister, too, is going through the exact same thing and has been for three years to the point that she takes pictures of body parts that she thinks are showing atrophy and sends them to her to see. She's had every test in the book, and she's been fine. I don't want that to be me. That's almost as frightening as having the actual disease, to be so consumed by the fear of it. And I'm so sorry that you're still going through it. I hope you can find some peace. I hope we both can. I have an order for an EMG and a referral to a neurologist, and I'm hoping it will help me settle this. My doctor just upped the dosage of my medication after I called their office in a panic. I hope that works, too.

Of all the diseases to focus on, I don't know why it's this one in particular. I'm at the point of being scared to go to sleep because I'm afraid I'll wake up worse than I was the day before, and in my mind, it seems like I am. My tongue has started twitching now, jumping around my mouth and quivering, and it's just made my fears even worse. I hate this.