What do you think?

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LiamDJHewitt

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Good evening, If this is slightly long I do apologise in advance.

I have always been a fit healthy male - I am 28 years old.

30th Sept 2021 - I got some big thumping twitches under my right arm, felt strange never experienced it before, shown family and they said it would go away eventually.
This happened for the next few days on and off. It felt like it was cut off with circulation or so. Felt a bit numb or dead hard to explain.
My feet then started to feel strange as if I could feel the blood pumping around it and a bit tingly. This went away after about a week.
Then around 8th October 2021, I started getting twitching (fasculations) in my left calve. Literally 1000's a day. Sometimes I would get it slightly above the knee cap, sometimes in my butt cheek, sometimes I felt my penis twitch which was a weird thing to experience. I would try to go to sleep at night and my stomach was too twitching, and my eye lid a lot. Then my other leg same again. I noticed when I walk around I don't experience it (only the eye lid) but soon as I come to a rest, feet up in bed or sat down it goes off non stop.

Obviously I was concerned by this as I have experienced these twitches since beginning of October 2021 and we are now at the end of November but I don't know if that is too short of time frame to experience other ALS symptoms? I obviously googled what I was experiencing, and ALS popped up, and it scares you. And I don't know if the fear of that can make the twitching worse maybe?

I am military and my Navy doctor said maybe it is lack of sleep?
Which I don't believe to be the case, but she said she would speak to a neuro and get back to me. Anyways she must of spoken to them cause I got an appointment in Oxford to go to a neurologist on 23rd Feb 2022, which made me think, is that precaution or because they are suspecting something.

But recently, as of last week ( I started the gym 3/4 weeks ago ) I would get back from my work out, and go to drink something and as I lift my arm up to take a sip, my arm and chest would start to vibrate and shake, it would progressively get worse till I was full on shaking in that area. Soon as I lower arms down the tremor would stop. So twitching and tremors - my main symptoms.

Now here is the other big thing, and it saddens me deeply to say this.

August 13th 2021 (6 weeks before my 1st twitch) my wife Chloe (27 years old) was diagnosed with Stage 4 stomach cancer.
3 weeks from that day we got married, and the same week of the marriage we sold our house. So VERY stressful time,
1. moving(dealing with solicitors),
2. weddings, and
3. terminal health of my best friend/wife.

I feel like I have lost my future with her as we couldn't buy another house due to her not working now after ours sold, we didn't have life insurance, the chance of us starting our own family is now gone, and as I type this we have been told she has days left to live. I have watched someone so young and beautiful decline so quickly.
So mentally it has been so tough these past 3 months, and maybe that could of triggered the twitches and tremors? I don't know.

Reading about ALS is like 2 in 100,000 and if you are under 30 even more rarer. But Chloes age and type of cancer was probably 1 in 1,000,000 and she had it.
But then what is the chances of her having that and 6 weeks of finding out having ALS myself surely 1 in 10,000,000.

So I would like to hear your thoughts on this. I hope it is a stress/anxiety related thing, and reading about ALS fuelling that.

Thank you for your time and those who are affected by ALS - I pray for a cure, and I am thinking of you all. Much love, Liam.
 

Nikki J

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I am terribly terribly sorry about Chloe. What a tragedy!

twitches and tremors do not add up to ALS. they sound very likely to be a completely understandable reaction to your great stress and grief?

I can only guess that the oxford appointment is a precaution.

please try to put this out of your mind , log off and spend every second you can with Chloe. Wishing you strength for these days ahead and a peaceful passing for her
 

LiamDJHewitt

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Yeah, life can be very cruel and always the very kind and lovely people tend to be on the receiving end unfortunately.

If you don't mind me asking for the awareness with the ALS, how come everyone comes to this forums mostly when they have twitches if it isn't a "sign"?
Just from watching videos lately of those who have been diagnosed they mention that is what they started with, so feels a bit mixed messages.

If someone like myself gets twitching in the legs, sometimes stomach, sometimes eyelid, hand etc - does that make you think from experience it isn't because if I read correctly on here, it tends to be in 1 place and spread from there like foot to lower leg to thigh, not jump from feet to a hand to other leg say?

and finally,

Do you think 2 months of twitches, if it was ALS you would of noticed something else maybe?
Like other symptoms with it, that makes it more obvious.

not going to post again after this but just read the posts instead - so thank you for taking time out to answer, and the kind thoughts towards Chloe.

Thankyou.
 

Nikki J

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Because Mr Google who is a quack sends them here. You will also find thousands of anxious twitchers in reddt and facebook groups. Something like 70 percent of the population twitch. Most just ignore it

anecdotes from people who may or may not be remembering accurately are not a good use of your time

ALS twitches are the distress call of dying motor neurons and yes ALS starts in one place and spreads. It doesn’t start all over and it doesn’t jump around. Weakness is usually first not twitches.

as someone who has lost multiple relatives prematurely to this horrible disease I beg you not to continue googling and reading . You will regret this lost time forever. Chloe needs you to be fully present.
 

affected

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Try reading this really carefully as it does talk about why twitching along means nothing.
It's kind of like thinking you much have a brain tumour if you have a headache.

I'm so sorry for all you are going through, and can't agree more - give your precious time to Chloe, she is the priority with a true diagnosis.
 

lgelb

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+1. Very sorry about your dear Chloe, but you will want to remember that you were really there for her in these last days or weeks. Even if you had ALS, which you don't, there would be nothing to be done that couldn't wait until after. It is she that does not have the luxury of time, I'm sorry to say. If you are overwhelmed, do find someone else in your life to check in with as you need to -- but don't let fear take over your time with her. She deserves everything you promised those months ago.

Best,
Laurie
 
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