ALS Rabbit Hole --- AGAIN!

[tan235]

I had the worse night sleep - I couldn't swallow about 5 times and it was freaking me out!
Does als work like that where you can do something and then you can't do something??

[pulisa]

As swajj said previously, when do you start therapy?

[Fishmanpa]

Does als work like that where you can do something and then you can't do something??

You don't have ALS. You just don't. Nor does anyone else here fearing the disease! ALS is about totally failing. If you've gotten to the point of not being able to do something (like swallowing) it would stop and that would be it... no more swallowing.

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


You do have anxiety and rather severe at the moment. I would see your doctor about help for your anxiety.

Positive thoughts

[tan235]

Thanks Fish - my eye is still twitching and it's just really frustrating me and making my anxiety soooo bad.
You're right, I need help - and to boot I'm still not getting better as welll with my cold - but my body is obviously under huge stress.
My whole body feels like it's twitching, my eyes are sore, if I touch my eye it bloody twitches, if I sneeze, they both twitch!

I think I need anti depressants.
x

[Fishmanpa]

Thanks Fish - my eye is still twitching and it's just really frustrating me and making my anxiety soooo bad.
You're right, I need help - and to boot I'm still not getting better as welll with my cold - but my body is obviously under huge stress.
My whole body feels like it's twitching, my eyes are sore, if I touch my eye it bloody twitches, if I sneeze, they both twitch!

I think I need anti depressants.
x

Ultimately, that would be a good first step toward recovery. Book an appointment with your GP and explain what's going on.

Just an FYI. I'm not a sufferer but the first couple of years after my cancer I would get what I called "scanxiety" before follow ups. It would manifest itself in irritability and sleeplessness. I spoke to my GP and we discussed the options. I was prescribed Buspar, which is a non SSRI anti depressant/anxiety med. I would start taking it a week or two prior to my appointments and it definitely took the edge off. The good thing about it was I could start and stop with nary a side effect. I also have an ongoing prescription for Xanax which really helped when my wife was ill. I went to therapy as well and I can't say enough for how it helped me after my illnesses.

You have to do something Tan. Your anxiety is obviously robbing you of your life. These are just words on a screen. Ultimately, it's up to you to take the steps. I hope you do!

Positive thoughts

[ScaredLizard]

^ 100% anxiety, yes. Whilst not being a HAer means I never doubted it was anxiety, it still happened when I was very anxious. The same with breathing. I can remember at my worst trying to work out how to generate thoughts to move a limb and even to generate another thought!

^^ Mine will happen when I'm not even having anxiety about health but worried about finances and plop I can't swallow. It sucks

[tan235]

Hi Everyone, OK my anxiety is full blown TODAY ... I read about a person who has ALS and they started with muscle twitches when they were asleep and that is what's happening to me = plus my eye twitch went away for two days and now is back with a vengeance. I can't cope I'm so paranoid right now and just in tears ... how do you get out of this????

---------- Post added at 05:17 ---------- Previous post was at 05:16 ----------

Also if i touch my eye it twitches like crazy! What's going on - I'm really struggling, 7 weeks now with a bloody eye twitch, that's 2 months and it's not slowing down..... x

[tan235]

Hi All!
So I went to see the neurologist - had to pay for it out of pocket as no Dr would give me a referral.
The neurologist was actually amazing, we spoke of eye twitching and ALS - he said not related and highly unlikely. MS and Parkinsons etc ... again same thing, unlesss there is something else happening, slurred speech, obvious things that should be the last thing to jump too.
He did a full neurological exam and then told me it's just an eye twitch.
He had an eye twitch for months going through med school.
He said that hypochondria is a body disorder, which i found interesting, I said, 'isn't it the mind?' - he said ' yes but it's the body that's the issue for you - the mind controls that body - heal the body - know you're healthy the body will heal the mind'
I thought that was pretty insightful.
So all in all it's just an eye twitch - 7 weeks later ..... he said it will fade when it's ready.

The ALS rabbit hole I was in was deep and horrible .... I hope to never go there again.

[ServerError]

I had a nose twitch that lasted for five months, non-stop. For some reason, when I tell "twitchers" on here, it never reassures them.

As you say, there's far more to these frightening and/or fatal neurological conditions than a random twitch. Indeed, twitching is one of the most common involuntary things the body does. It can be triggered by almost anything. Most twitches are basically a mystery.

My advice to you is not to see this is as your end goal. This appointment should be a marker in the direction of your end goal. Going off other posters here (including myself), there's a good chance that, as the twitch continues, you'll start to question your neurologist. Obviously it's great if you don't and the reassurance really does last, but I would hope you act on his advice. Look after your body, and get some help for the psychological aspect, if you can.

[Fishmanpa]

Here's your "Told ya so!" Hopefully now, you can begin to heal.

Positive thoughts