Going out of my mind

[Viking818]

About a month ago started with right and left calf cramps. They were quite uncomfortable and would usually wake me from sleep. Once awake, I rarely fell back to sleep. So, for about a month, I am usually up 5am each day. So sleep isn't great.

Last Monday I finally visited my GP who said "probably a magnesium deficiency....dehydrated....not enough water....take these pills" I left feeling OK.

Next day, while looking at my right calf, I saw a small twitch, almost like a dimple. Then another. I didn't give it much thought. The next day both calves looked like worms were crawling around my calves. The more I looked, the worse it got. Next logical step? Google. Since last Wednesday, I am CERTAIN I have ALS. I called the doctor and asked for call back and nothing. Called again the next day, answering service. I was told "someone is in the office, they just have the phones off." Being the HA person I am, I drove there. Lights off, door locked, I kept calling and calling. After 10 minutes, I left. Once around the block I figured I would try again. This time I did see a nurse walking to her car. I pulled up and she could see the anxiety. She asked what was going on and I explained it. She said she was fairly certain the twitches were from the magnesium deficiency and follow-up next week (this was Friday). I do have an appointment for a full physical this Friday.

But I must say, once I opened that box, the terror is real and all encompassing. I can't stay off forums. I can't stop searching the web. Today I am searching prices for wheelchairs.....how to apply for disability.....end of life documents. I can't stop. I did find this group last night and it helped. Even my wife asked "what did you read that gave you some hope...you almost seem relieved!". It was this forum. But then today I was back to Google. Found an article where PALS patient had my same starting symptoms and I completely unraveled.

People who don't experience this don't get it. I wish I could "just stop being ridiculous!".....I wish I could believe the odds......I wish I could be happy again.....I don't see hope.

What has helped some of you overcome this fear? Should I talk to someone? Take meds? It's so very hard to let down this mask I have worn my entire life and let others know how much I suffer from HA. I've probably had 8 major ailments over the last 3 years. Covid made it worse and just since May I've had colon cancer, chordoma, DVT (first calf self diagnosis) and now ALS (according to Dr. Google). Like all other "illnesses" I will probably just wait this out too. Either I get better and it goes away.....or it doesn't and there isn't a treatment option anyway....

This is rough.....

[jojo2316]

Hi!
welcome to tha Als rabbit hole. It is indeed a miserable place to be. My calves twitch all the time. And my feet. I get twitches all over my body- actually….. but calves especially. I have been in and out of this fear for years. And I have also been to a neurologist for an assessment. She told me something very comforting. She said that she sees people worried about twitches several times a week. And - over the course of her ENTIRE career - not one single one of those people had, or went on to develop, ALS. Twitches, she said, in the absence of clinical weakness are entirely meaningless.

[Viking818]

Thank you! This response means the world to me.

[Catkins]

Viking818 - there is medication that can help and there are therapists, CBT and a whole array of things out there that can help with HA.

This site is great for information on ways to get help, first point of call is to speak to your GP and tell him about your HA and take it from there.

[Viking818]

Thank you. I will!

[Fishmanpa]

Just a read through this sub-forum and you'll see numerous posts similar to your own. As you were told on the ALS forum (and PLEASE stay off that site!), what you describe and as you were told by your doctor, this is not ALS and most likely a magnesium deficiency.

Take the advice above and I hope you feel better soon!

FMP

[Viking818]

I feel horrible posting there and even tried to delete it. Based on the thread title, I assumed it was moderated differently. I see now how insensitive it was.

[Fishmanpa]

I feel horrible posting there and even tried to delete it. Based on the thread title, I assumed it was moderated differently. I see now how insensitive it was.

You're not alone as the folks there deal with health anxiety sufferers daily including many NMP members. In fact, they refer people to this site often and the stickie at the top of the page should look familiar as it came from that site. I saw it as well on the cancer forums I was part during my battle and in fact, it's what led me here. I stuck around to try and help. I don't doubt you're experiencing these symptoms, they're just not related in any way to ALS.

FMP

[NoraB]

But I must say, once I opened that box, the terror is real and all encompassing. I can't stay off forums. I can't stop searching the web. Today I am searching prices for wheelchairs.....how to apply for disability.....end of life documents. I can't stop. I did find this group last night and it helped. Even my wife asked "what did you read that gave you some hope...you almost seem relieved!". It was this forum. But then today I was back to Google. Found an article where PALS patient had my same starting symptoms and I completely unraveled.

You can stay off forums.

You can stop Googling.

You can stop.

Nobody is forcing you to do these things. Each time you Google a symptom, you are making a conscious decision to do so - despite knowing it's the psychological equivalent of throwing fuel on a fire.


People who don't experience this don't get it. I wish I could "just stop being ridiculous!".....I wish I could believe the odds......I wish I could be happy again.....I don't see hope.

I do get it. This was me, with MS, cancer, heart failure, stroke etc and this is why I have no problem in challenging what you're saying. If I can do it - why not you?


What has helped some of you overcome this fear?

Acceptance of inevitable death and of potential illness. Change what can be changed (even if it's only my own attitude) and endure the rest. And with as much courage and grace as I have within me.

Also, the knowledge that when I actually came close to dying - I wasn't scared at all because it was real. It was happening. It wasn't imagined, and I coped far better than I thought I would. My imaginary diseases, however, have brought me to the very brink of my sanity..


Should I talk to someone?

A therapist? Absolutely. Or speak to people (like me) who have overcome HA..


Take meds?

Medication can be helpful with health anxiety but needs to go alongside therapy for you to effectively overcome HA. Medication just puts it to sleep but the problems generally come back as soon as people come off the meds. This is an issue with thinking. You thought your way into this, and you need to think your way out again.. To do this, you will need to challenge your thoughts and re-frame situations..


This is rough.....

Yes, it is rough. It was a living hell in my case. Hell of the mental breakdown kind after 40 years of living with HA - but with a lot of hard work and determination I overcame my HA and three years later, I've stayed out of that hole despite some major health concerns..

[Viking818]

Was doing OK. Twitches only in calves had calmed down and ignoring them. Today in addition to calves, add feet, thigh, bicep, elbow, and top of head. Could progression be so widespread in a week or is anxiety in overdrive and I’m not seeing it?

[Fishmanpa]

Could progression be so widespread in a week or is anxiety in overdrive and I’m not seeing it?

You know the answer to that question :whistles:

FMP

[niknakx]

I really empathise with you. My twitching in my legs has been absolutely crazy for a few weeks now and is progressively getting worse. The twitches are more frequent and more dramatic. Mine are almost completely isolated to my two legs and feet. I can visibly see the twitches under the skin move and dimple all day everyday now.
I’ve been to see a specialist in the disease and he is going to do a full EMG of my whole body next week as he also agreed that I have atrophy viable on my left foot. I am with you. I know how scary this whole thing is. I am keeping myself as busy as possible until I have this test.