Family history of ALS, concerned son.

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Miketyyy

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I have read the sticky notes, but things looks so complicated that any help would be highly appreciated.

Im 22m, my father 56y/o was dignosed with ALS recently, his primary symptoms are atrophy,weakness and widespread fassiculations, my father has 7 brother n sister, we are a big family and except for my father we have no history of ALS, my father served the army as a technician for 20 years. And im have been is primary take care for 2 years now.

Now my symptoms started 2 months ago as widespread fassiculation all over the place legs hands stomach butt and even on back and in past 1 weak while walking my right leg calf become tight, though it is much better now but my right leg is still not able to take load properly.
I must admit taking care for my father has taken a toll on my mental health and i do suffer from anxity now, shall i just relax and let this phase pass or does it sound serious and i should go to a doctor.
 

affected

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I'm so sorry about your dad and thank you for caring for him.
Please go talk to your fathers doctor and discuss your fears so you can be reassured that you are not experiencing ALS. Being a CALS does take a huge toll on your mental health and you can receive help for that. Please take care.
 

lgelb

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When we say "see a doctor for reassurance," in countries where the pandemic makes that less safe, even a phone call or video visit can be helpful. And since you are caring for your dad, it can be difficult to be as physically active in the same ways as you were before, so remember to stretch morning and night, and before any heavy pushing or lifting.

Don't be anxious on your own -- text a friend. Stay in touch with the outside world a bit.

Best,
Laurie
 

Miketyyy

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Is it possible i gave gotten als from my father? When no other person in my such a big family tree has never had als?. If its not Heredity im sure i dont have als, but these twitches and leg issue are making me crazy, just want to shout as loud as i can. This cripling anxity and fear of ALS is making me crazy i want to rant out so much but in the end its all pointless.
 

affected

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It is highly unlikely - please talk with your fathers neurologist about this. It really isn't appropriate to keep asking terminally ill people who have not examined you to calm your fears. His doctor will be able to give you advice relating to your exact situation.
It does not sound like this is the hereditary form of ALS, but that is why you need to speak to his doctor. All the very best.
 

rmt

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@Miketyyy There are a lot of us here who are caretakers of people with ALS (called CALS), and understand the stress you are feeling being in that role. If you just want to vent how you are feeling as a CALS (NOT about your fears that you have ALS), there are lots of people who understand that! Once you get over your fear of having ALS, if you need support as a caregiver, please feel free to post about any questions/feelings you have.
 

Miketyyy

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Thankyou everyone for your kind response, i have an appointment unfortunately it is on 28th april.

I was not gonna post here till my doctor appointment, but after a few symptoms update i had no where else to go, cant even tell my family members im also exhibiting similar symptoms.

Symptoms update:
Widespread twitching is reduced its been lts been a few says since i got stomach or backtwitches. Twitches are more when i rest.

But unfortunately twitches have increased in my legs both of them but more twitches on right which is facing more issue, my entire right leg is stiffed calf and thigh muscles feels very tight while waling but no issues of stifness while resting.

But last night arond 10 pm i suddenly noticed a shooting pain on bottom of my leg, i can assure you it was not there a min ago, a sudden shooting pain appeared and that too when im trying to give me right leg complete rest.

I can still walk, though with some issues due to stifness and pain and i can still walk on toes and my heels, im worried that the next step might be footdrop. (My father walking decreased with time and then he had a foot drop after footdrop he noticed twitches in his effected leg, his symptoms also started from right leg, mine too

May with god grace all be fine, and a major breakthrough happen soon, amen
 

lgelb

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Everyone has unexpected, unexplained pain from time to time. I am sure the appointment will be reassuring. Remember, familial ALS does not show up at an age 20 years younger than the age of onset for the person it was passed from.
 

Miketyyy

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I got anxious after this post, so i decided i will video call the next available neuro. Around 5 hours ago was the appointment.

He told me it could very well be begining of ALS, and wrote me a few meds like anxity and muscle relaxant. And told me if in 15 days the leg does not feel better to get an EMG AND NCS of all 4 limbs.

He also told be it could very much be nothing and will get better on its own, he didnt sound very reassuring, i think i would wait for my in clinic appointment as thats with a differnet doctor?

What should i do? Shall i do my emg and ncs after 15 days or wait for in clinic appointment, my right leg twitches and stiffness and pain like sensation near pelvic area are like killing me from within.

And does als start from a specific part like thigh, calf foot or the entire leg can be affected at once?
 

affected

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I'm thinking this was not a neuromuscular specialist neurologist?
If you go to a doctor saying "I think I have ALS" you will end up with them discussing this disease and hedging around it as they can't say anything for certain, especially on a televisit. This then heightens your anxiety over it because "he said, it could be."
You then don't know what disease processes they would have actually investigated if you had simply presented your symptoms and asked what they think could be going on. The difference in outcomes of the appointment are huge.

It really doesn't happen that the 22 year old son of a 56 year old, develops ALS at the same time.
ALS starts in the brain.

You still are not exhibiting failure, you are exhibiting lots of twitches, pains and sensations. That is not an ALS concern.

Please see your regular doctor and ask for help maintaining things until you see your fathers neuro in just a few weeks. You are obviously in urgent need of help with dealing with your fears. Only a doctor can direct you to that help.
 
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