Could this be ALS/Familial?

[WorryBee]

I want to say my thoughts and prayers are to each and everyone one here. It is a terrible disease and I can’t wait to the day it is cured.

History:

My grandfather(passed away from) ALS way before I was born. He was in his late 50s early 60s. He was a farmer exposed to harsh chemicals and fertilizers. His first symptom was the leg drop. No other ancestors before him had ALS nor does his 2x daughters(my mom/aunt) nor his son(my uncle). We think this was sporadic and caused by his exposure and work history.

Symptoms:
For me, I will be 27 this year but have recently been seen for an eye twitch. It is constant, but lasts for a few seconds. All the posts here, I have never seen anyone mention about an eye twitch. The second more interesting development is at work I started to feel heaviness/weakness in my hand and that night I kept feeling like a warm rushing feeling down my arm. Next day I saw a doctor and mentioned about my eye twitch he said a lot of people get them and anxiety attacks. He did blood work and it came back fine and said my arm was anxiety. Also sent referral over to Neurologist. Every time I would lay down/get sleep the arm would wake up fine. However during the day I would feel soreness around the elbow/forearm and somewhat feeling of weakness but am just fine(by general use). This has caused me to worry has even one night it went to my left arm while leaving my right arm fine. I am feeling pulsing/lingering pain/weakness in the forearm and hand area that quickly goes away. Now today been feeling that same in my leg/knee area. Any thoughts about this? I am concerned I my have inherited it or am a early bloomer of it. As my name suggests I am a worrier and have just been prescribed meds for anxiety attacks.

 

[Nikki J]

Eye twitching is not worrying. Period. I am really FALS and when I was in a presymptomatic carrier study they recorded every microscopic tiny symptom but when it came to eye twitches the doctor ( a famous ALS specialist) didn’t care

heavy warm feelings are sensory symptoms. ALS is a motor disease not sensory.

one relative , diagnosed at the most common age for ALS, is not a red flag. Also even in known FALS families it would be uncommon to have a 30 year age difference

i hope your meds help. Some counseling might not be amiss as well

let us know what they neurologist says

 

[WorryBee]

Hi Nikki,
Thank you for the reply and your response(s) has provided me some peace of mind.

Take out the eye twitches, my only symptom is the feeling of “pain” in the elbow and knee areas and sometimes that would go to my forearm/hand with a “muscular tiredness feeling.” The left arm seems to get the symptoms but after sleep and rest it all goes back to normal. I am able to do things just fine and work out. It seems all things point to not being it? I do have some knee twitches(couple seconds then go) and a “weak” knee area.

And yes I will update with what my Neurologist says.

I look forward to hearing back and again thank you for the kind words. This community is very supportive and understanding.

 

[affected]

Yes, none of what you report would raise flags about ALS, so that's great news.

I hope you can sort it soon, it could be anything from viral, sleep issues, worry, overuse, ergonomic or even a vitamin deficiency. All these things are really common and treatable too.

 

[WorryBee]

Hey there,

Thank you for your replies. Just wanted to provide an update.

Having achey/pulsing feelings that affect my hand/arm(both sides) comes and goes away to a normal feeling. And then my leg was quite achy around the knee and then goes away to normal. Some random twitches on my body. Do have some migraines.

Again thank you for your time to read and to respond to our posts.

 

[ShiftKicker]

Hi there-

Please make sure to read the Read Before Posting

You've posted about pain before and folks have tried to reassure you. It really sounds like you need to speak again with your doctor or a physio about figuring out the actual cause of the pain. Worrying that it's a sign of ALS, despite not reporting anything that would give a doctor concerns about ALS might indicate you're also ignoring options that might provide you relief from your mentioned pain.

~F

 

[affected]

I do hope you take all concerns back to your doctor.
Nothing you are feeling is connected to ALS, so it is important you see a doctor and ensure there is not something treatable happening.

 

[WorryBee]

Hi there,

I started talking to a counselor and he provided some good tips about anxiety. I am taking my anxiety meds which seem to pull me from over the edge and am still lifting.

I do have several questions: I have read the post before posting: what exactly is spasticity and cramps? Is it everywhere or only the affected areas?

Reason why I mentioned that: I’m still having some aches(both side arms, legs, and random twitches) and a feeling of restless leg in my right leg.

My final question is: can ALS skip a generation if it is sporadic?

Still waiting on the neurologist, and these aches… can’t tell if cramps or not do not help. I will say the past few days the pain comes goes and my left arm now seems to get the feeling of being “tired” such as using a comb in the shower. The worst wait is for the neurologist and I keep pushing myself down this rabbit hole.

 

[Bestfriends14]

Those are things you do not need to worry about since you exhibit neither. Please take further questions to your GP. It is up to you if you continue going down this rabbit hole and you can, if you truly want to stop. First step, quit asking questions on a forum for terminally ill folks, expecting them to feed your health anxiety. It is not anyone's job here to do so. Second, stop reading threads here, third, go back to you doc and ask for further help if you cannot stop this unfounded fear.

Good luck to you and take good care

 

[affected]

I know you are highly anxious about this but we can't really do more until you come back with some neurologist results.
Not being fast tracked there is good sign number one.
Sporadic ALS is different to Familial and no, it does not skip generations, not ever.

Aching, cramping and feeling tight are not symptoms of ALS on their own.

What your anxious brain isn't allowing you to take in is this: you do not have the important hallmark symptoms of ALS. Because you won't allow yourself to really understand that, you keep circling around the bottom of this rabbit hole.
We can't do this with you.

We can talk to you about what the neurologist says and finds.

Until then, you can join subreddits for twitching, aching, cramping and health anxiety. Warning - it may make you more anxious! But if you must talk to non medical people, that is where you need to be.

I hope you get yourself out of this hole - your doctor can help with that too!

 

[WorryBee]

Thank you for your kind responses.

I will be reaching out today to the GP for a follow up. I am not sure when the referral will go through, been in this ground of nothing else to do but wait.

Anxiety has been constant. Counseling has been helping and the take as needed for anxiety attacks has worked.

The twitching now is in random parts of the body. The twitches last a few seconds then disappear. As far as the muscle cramp, it is a pulsing pain that will appear randomly(hand, foot, leg, knee, both sides) go away then appear somewhere else. Some days I have no pain or cramps and then the other day I will, seems to be more constant when I focus on it. It’s like I keep testing for clinical weakness.

What worries me is I read about germline mutation where it skips a generation, but have never seen any supporting evidence, nor does my ancestors besides my grandfather have it( a positive?).

Will keep updated. All love, very thankful your kindness and understanding.

ALS Often Has Genetic Basis Even Without Family History

A new study confirms that gene mutations may be responsible for many cases of sporadic ALS, but it also suggests that not all mutations in genes linked to ALS cause disease.

www.medscape.com

 

[Nikki J]

You are not helping yourself by googling.
germline mutations are incredibly rare

again assuming although there is no evidence there was a family mutation that you inherited you are so much younger than your relative that it isn’t reasonable to worry

we have a lot more genetic testing data than they had when that article was written. The amount of autosomal dominant genetic ALS in SALS is considerably lower than their estimate and it is more commonly found in those of younger ages than your grandfather. As I previously told you his onset age was typical for SALS

i was closing this thread because you are not benefiting from it. Please do not start another