Worried I may have als

[Haydon1990]

Hi all hope you are all okay

I hope someone can shed some light as to the signs and symptoms of als

I'll start by how my symptoms stared my left leg goes rubbery / jelly like also my joints are somewhat painful but the biggest worry for me is the twitching muscles that I get they are relentless hands back arms
Head I'm having them now writing this post they are really worrying
I do however worry a lot i have anxiety Iv recently Had blood test all was normal but I have a slight elevation in ck with I believe is creatin knease ? Or something like that sorry I'm not really sure of
The correct spelling I also get a creepy Crawley sensation on my head also I'm very fatigued all the time..... I guess what I'm looking for is do these symptoms I'm experiencing sound like the start of this wicked disease I'm worrying my self
Sick Thanks for
Taking the time to ready enjoy you night.

 

[Alex123]

Hi Haydon, what you describe that you feel in your leg I haven't heard before as a symptom of ALS. The muscle twitching is something very common in ALS, but it can also be caused by many other diseases. Elevated creatine kinase is a sign that some muscle tissue is being destroyed, but that can also happen with other diseases. The thing is there are many diseases that have symptoms similar to ALS but that treatable or even if some of them are not treatable, they may have a better prognosis than ALS. So the first step is to test for all these other diseases.
Probably when you see a neurologist, he/she will order an EMG study and many other tests.

 

[Atsugi]

Haydon, you described pretty much lots of diseases and conditions. You might not be eating well.

I see no reason to leap toward a rare fatal disease. See your doctor, but don't worry about ALS.

 

[Haydon1990]

Hi Haydon, what you describe that you feel in your leg I haven't heard before as a symptom of ALS. The muscle twitching is something very common in ALS, but it can also be caused by many other diseases. Elevated creatine kinase is a sign that some muscle tissue is being destroyed, but that can also happen with other diseases. The thing is there are many diseases that have symptoms similar to ALS but that treatable or even if some of them are not treatable, they may have a better prognosis than ALS. So the first step is to test for all these other diseases.
Probably when you see a neurologist, he/she will order an EMG study and many other tests.

Many thanks for a fast reply
I seen my doctor the other day he did a blood test for anti body receptors sorry if that's not the correct term
My farther has a condition called MG it's a muscle waiting disease thankfully the results came back ok so doctor has ruled that out I'm going crazy with all the worry and crazy twitching I'm getting a also get random pains all over the body it's a really nightmare I feel like it's depressing me I'm stung glint with work I get in and just want to sleep it's the only thing that stops me worrying silly I know ! In one respect I'm hoping it is anxiety but also hoping for a diagnosis

Many thanks for reading

 

[Atsugi]

Haydon, how old are you?

 

[Haydon1990]

Sorry about late reply I'm 25 years old

 

[Haydon1990]

May I just add that my wrist on my left hand side it very weak also when I get up and walk my ankle gives way but soon after they are fine again ! All this is driving me crazy Iv just had promotion at work I should be happy at my age but constantly find my self looking for horrible symptoms ! I also have a feeling that I'm finding it hard to swollow like I have mucus stuck in the back of my trouht am always trying to clear it out sorry to be so grim about it I went to the golf range last night with a struggle and all my muscle in my hand are now very tender to touch ! I really am sorry to ramble on I know they is people out there far worse than I am i thank you all for taking the time to read my post

 

[Atsugi]

Your latest post complains of an ankle that gives way BUT heals itself. Also, your hand is "tender" which I think means painful to touch.

When a muscle is weakened by ALS, it's because the motor nerve that sends the "go" signal to that muscle has been destroyed in the brain. It can never come back.

You don't have anything to fear from ALS. I think you identified the problem, though, when you said you "should be happy." After seeing the GP, you might want to talk with a mental health professional.

Your age is a factor. I recently looked at a database of patients with ALS, and they average 50-60. Of 1800 patients, only three were in the twenties: 27, 28, and 29. If you had ALS, it would be a world record.

 

[lgelb]

Since age comes up a lot, and I don't want to post in every thread, I have added the Registry age/gender table to an album. It shows 4.2% of 12,187 PALS in the 18-39 group.

 

[affected]

It should show how many of those young onset were FALS Laurie, as sporadic in that age group is incredibly rare ... I know you didn't make the table, just sayin


Tillie

 

[Alex123]

I think everyone of us has a different approach to difficult situations.
We could phrase it in a Shakespearean style as "To know or not to know"
Some people would prefer not to know if something bad is going to happen, specially if they can't do anything about it. It is like the musicians on the Titanic who kept playing. Maybe we all do that to a certain extent as we all know that death is inevitable but we continue to live our lives as if we were never going to die.
Some people, on the other hand want to know what lies ahead even if that is a depressing or frightening truth. They think that if they have better knowledge maybe they can do something about it to prevent the undesirable outcome. But even if they can't do anything about it they prefer to know what lies ahead.
So when we give advice on this forum, it doesn't always fit the personality of those we are trying to help.
I personally am the type that prefers to know everything. So I apologize if my advice is in conflict with those that prefer to be very cautious in what they say or ask to avoid causing stress.
In this case, even if the symptoms and age of onset make it less likely that it is ALS, something very improbable may still happen. But I think the best approach would be to keep in mind all the symptoms and look for the most likely causes and put your bet on those other possible diseases first. I would try to get tested for them. If one of them turns out to be the actual disease then you can forget about ALS and concentrate on that. If everything comes negative, then there is always the possibility that it is ALS, but if the symptoms are a little different from the typical ALS, it could be some rare disease that has not been categorized. Even what is normally labeled as ALS can have many different "flavors" and in some cases can be very different from the most prevalent cases. On case that comes to mind is Steven Hawking, who got ALS when he was very young and he is still alive, which is also very unusual.
I understand that sometimes symptoms can have a psychosomatic origin, but it is very frequent for doctors to blame stress or some other psychological factor for something they don't understand. In this case, I would keep investigating, writing a list of my symptoms and seeing different doctors to get their opinions.

 

[Alex123]

Haydon, I have some questions for you:
1) Is your father taking medication for MG? If he is, is the medication working?
2) Do you find your symptoms similar to those of your father? (I am aware that you tested negative)
3) Do you have more mucus coming form your throat after drinking some soda with sugar like Coca-Cola ?
4) Have you seen a neurologist?