Back down the ALS hole :(

[darkside4k]

Hey everyone,

I haven't been on this board in a while. I have been worried about stuff in the meantime but I've noticed my personality shifting a bit. I don't fear death as much anymore so I think my overall hypochondria fear level has gone down even I fear things sometimes. I have more of a "even if that's true oh well" type of attitude.

However, the past couple of weeks I have been sinking down into the ALS hole again and it's giving me the most trouble in a while. I went down this hole for most of late last year and early this year which eventually culminated in me having a EMG last October and a muscle biopsy (!) in December where they extracted a chunk of my leg muscle and left me with a big scar. All eventually came back normal and my symptoms went away after many months.

My main symptoms then were burning fatigue sensations in legs... twitching... particularly twitching fingers but other twitching hot spots as well. These were real symptoms to the point where it was sometimes painful for me to drive because my shin would burn so much just from working the pedals.

So... the new stuff...

About 3 weeks ago I remember I was popping my back a lot during the day. Like I felt like I had this deep crack down low I needed to get out so I was really reaching around and twisting around my chair trying to get it to crack. That night, I felt a strange sensation in top outside area of my left arm (the one that was mainly reaching around my body). At first I wondered if maybe I had over-streteched and irritated it. However, the feelings have continued and evolved.

Now basically every day my left bicep and tricep have fatigue and honestly feel generally weaker. Yesterday to test them I did 30 bicep curls with 25 lb. weights. My left arm today is *much more* fatigued than my right arm which feels essentially normal and not sore at all. I'm very concerned my left arm is deteriorating because of ALS.

[Fishmanpa]

Clinical Weakness—ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work
See also EMG, weakness and atrophy


Positive thoughts

[Carys]

I went down this hole for most of late last year and early this year which eventually culminated in me having a EMG last October and a muscle biopsy (!) in December where they extracted a chunk of my leg muscle and left me with a big scar. All eventually came back normal and my symptoms went away after many months.

Then you need to learn from this last experience, really learn from it. You've been here before, many times, same symptoms, nothing wrong, symptoms went.....its as simple as that. As someone who had HA in the past, admittedly a long time in the past, I can at least say that once I 'd 'had something' and then it just spontaneously resolved, then at least the next time it happened exactly the same I didn't concern myself. Start working hard on repeating that to yourself, forget about it, ignore it and get on with life.

[nomorepanic]

You have been checked out and all ok so move on please from this.

[Murphy93]

Hi Darkside

I’m sorry to see you are having a set back - it happens , the trick is to try and stay there for too long . I’ve been suffering with this fear for almost 2 years now and can’t even begin to describe how it has destroyed my life . I totally get how it consumes you it really is terrifying.

Every single one of us has a limb stronger than the other , perhaps that’s what’s happening here with your left Arm . I used to imagine I was getting weaker everywhere then a couple of months later I would be fine .

I’m currently taking some herbal anxiety meds magnesium and vit D and find myself feeling a bit better - I’m not saying it’s a miracle cure or works for everyone but I’ve certainly found myself feeling less anxious .

I hope you climb back out the rabbit hole soon 2020 is tough enough as it is . :)

[NoraB]

I initially read the title of this thread as 'Back down the @rsehole'.

And then I read this sentence..


Like I felt like I had this deep crack

I'm so sorry you're struggling, but I'm in absolute bits here.

I really need to get some therapy! :huh:

[Lolalee1]

Same here Nora :roflmao:

[Carys]

Darkside has had ALS discussed with the community, in incredible depth many times on many threads over many years. Certainly Darkside was sure of ALS in 2017, and I believe certain on other forums prior to that. I think looking back at those threads, learning from advice given there and from his/her own feelings and responses at the time is what needs to happen here. Urgently.

[darkside4k]

Darkside has had ALS discussed with the community, in incredible depth many times on many threads over many years. Certainly Darkside was sure of ALS in 2017, and I believe certain on other forums prior to that. I think looking back at those threads, learning from advice given there and from his/her own feelings and responses at the time is what needs to happen here. Urgently.

Not to start a big fight about it, but I’ve seen several times people insinuate I have posted on ALS boards and try to link me with a more infamous anxietyzone user.

I want to state very clearly I have never and will never post on a board for ALS sufferers.

The arm symptoms have continued since my post but I’m trying to keep a calm mind about it.

[Fishmanpa]

Regardless of the board its posted on, its a re-tread of previous fear (https://www.nomorepanic.co.uk/showthread.php?232551-Now-Having-Bulbar-Symptoms)s :shrug:

Positive thoughts

[Carys]

Not to start a big fight about it, but I’ve seen several times people insinuate I have posted on ALS boards and try to link me with a more infamous anxietyzone user.

I want to state very clearly I have never and will never post on a board for ALS sufferers.

I didn't insinuate any such thing about using ALS boards, however, yes , I did think you had used anxiety zone. If I have mixed you up with someone else then sorry about that, but the fact remains for a couple of years on this very forum you have rehashed the ALS theme!