Fightuntilucant
New member
- Joined
- Feb 25, 2022
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Brooklyn
I come in peace with humility and respect especially with all you are going thru . I feel like I have lived hell the past 18 months.
I am a 47-year-old fitness freak been in shape my whole life ripped very strong up until around pandemic time. Starting in June 2020 I was diagnosed with CLL And still up to this day my blood numbers are very good no need for treatment.
I still tried to remain active and do home work outs and such but it seemed like my strengths and weakness just went downhill severely no matter what I did and I just kept feeling sicker and weaker after every workout . Which made me at best work out twice a week.
I’ve definitely lost a huge amount of muscle I still have some strength just nowhere close to what it was.
Fast forward to December 2020 I was in and out the hospital constantly with many symptoms including Extreme fatigue
Weakness
Joint pain
Loss of taste and smell
Nauseous
Fever
Night sweats
Headaches
Very weak
Tired
Constipation
Diarrhea
Vision blurry
Red eyes almost yellow where the whites are
Blood oxygen drops to 80
Floating oily stools
Loss of appetite
Loss of balance
Headaches
Itchy skin
Throat Nodule
Dizziness
Lightheaded when falling asleep
Trouble breathing
Tachycardia
Bradycardia
Shallow breathing
Frequent urination
Trouble sleeping
Hand falling asleep during sleep
Trouble swallowing sometimes
Sore throat
Body parts tingling
Extremely dry mouth when waking up from sleep in middle of the night
Stuffy nose nightly
Sometimes runny nose
Overall feeling of being sick
Breathing feels sharp crisp cold air almost like a burn...
Now I know that’s a lot and some could be unrelated to als .
But I am extremely tired every day I force myself to 10,000 steps a day sometimes less but noticed fascilations In October seemed like they were general but who knows maybe I missed where it started but I’ve had them in my eyelids my lip my left shoulder and tricep left and right legs butt cheeks even my stomach and back.
I’ve scanned my whole body through MRIs blood tests you name it over the last 18 months , it all unremarkable. went for an EMG in November and it was normal. I asked is it possible to still have ALS , my neurologist said he’s put it at the bottom of the list now. His overview is provided in the pictures.
I feel like I have noticed atrophy in my hands and legs although my grip strength is still pretty good and obviously I can still walk. Haven’t Failed on any level as far as tripping or can’t lift limbs or slurred speech . But it seems like every other symptom is apparent.Including cognitive skills where I’m doing dumb stuff several times a day like putting serial in the refrigerator or dumping condiments in the wrong pan etc.
The twitches got so bad I asked if I could come in for another EMG after three months he said no let’s wait till May because he doesn’tthink we will see Much different than what we saw three months ago.
I have read a lot on this forum that failure would be the true indicator along with clinical weakness and all these other symptoms but I’m just wondering if that’s what’s to come next is this the pattern how it usually goes.Should I try to push harder for another EMG?
Just to add some context I have no family that have had ALS but my grandmother did die of MS at 40 years old however I haven’t felt much tingling or numbness for about a year.
But I would say an overall assessment of my time every day is I’m very tired feel very weak my eyes are really heavy I am completely exhausted from the moment I wake up until the moment I go to bed I have some days where I have more energy than others but just about every day is very rough I live alone and do all my chores There’s no way I could be working right now. I literally force myself to get up several times a day to do my 10000 total steps.
So I’ve read that failure usually comes before you even notice weakness but is it possible I can be different I’ve read so many differing opinions just hoping for some firsthand knowledge as a lot of smart people on this forum Because who would know better than the people that have experienced ALS....
There is probably a TON that I’m leaving out I have felt terrible for over a year with so many symptoms ,tests ,ER Visits , my head is still spinning so any questions I will be more than happy to answer.
I truly appreciate any insight !
I am a 47-year-old fitness freak been in shape my whole life ripped very strong up until around pandemic time. Starting in June 2020 I was diagnosed with CLL And still up to this day my blood numbers are very good no need for treatment.
I still tried to remain active and do home work outs and such but it seemed like my strengths and weakness just went downhill severely no matter what I did and I just kept feeling sicker and weaker after every workout . Which made me at best work out twice a week.
I’ve definitely lost a huge amount of muscle I still have some strength just nowhere close to what it was.
Fast forward to December 2020 I was in and out the hospital constantly with many symptoms including Extreme fatigue
Weakness
Joint pain
Loss of taste and smell
Nauseous
Fever
Night sweats
Headaches
Very weak
Tired
Constipation
Diarrhea
Vision blurry
Red eyes almost yellow where the whites are
Blood oxygen drops to 80
Floating oily stools
Loss of appetite
Loss of balance
Headaches
Itchy skin
Throat Nodule
Dizziness
Lightheaded when falling asleep
Trouble breathing
Tachycardia
Bradycardia
Shallow breathing
Frequent urination
Trouble sleeping
Hand falling asleep during sleep
Trouble swallowing sometimes
Sore throat
Body parts tingling
Extremely dry mouth when waking up from sleep in middle of the night
Stuffy nose nightly
Sometimes runny nose
Overall feeling of being sick
Breathing feels sharp crisp cold air almost like a burn...
Now I know that’s a lot and some could be unrelated to als .
But I am extremely tired every day I force myself to 10,000 steps a day sometimes less but noticed fascilations In October seemed like they were general but who knows maybe I missed where it started but I’ve had them in my eyelids my lip my left shoulder and tricep left and right legs butt cheeks even my stomach and back.
I’ve scanned my whole body through MRIs blood tests you name it over the last 18 months , it all unremarkable. went for an EMG in November and it was normal. I asked is it possible to still have ALS , my neurologist said he’s put it at the bottom of the list now. His overview is provided in the pictures.
I feel like I have noticed atrophy in my hands and legs although my grip strength is still pretty good and obviously I can still walk. Haven’t Failed on any level as far as tripping or can’t lift limbs or slurred speech . But it seems like every other symptom is apparent.Including cognitive skills where I’m doing dumb stuff several times a day like putting serial in the refrigerator or dumping condiments in the wrong pan etc.
The twitches got so bad I asked if I could come in for another EMG after three months he said no let’s wait till May because he doesn’tthink we will see Much different than what we saw three months ago.
I have read a lot on this forum that failure would be the true indicator along with clinical weakness and all these other symptoms but I’m just wondering if that’s what’s to come next is this the pattern how it usually goes.Should I try to push harder for another EMG?
Just to add some context I have no family that have had ALS but my grandmother did die of MS at 40 years old however I haven’t felt much tingling or numbness for about a year.
But I would say an overall assessment of my time every day is I’m very tired feel very weak my eyes are really heavy I am completely exhausted from the moment I wake up until the moment I go to bed I have some days where I have more energy than others but just about every day is very rough I live alone and do all my chores There’s no way I could be working right now. I literally force myself to get up several times a day to do my 10000 total steps.
So I’ve read that failure usually comes before you even notice weakness but is it possible I can be different I’ve read so many differing opinions just hoping for some firsthand knowledge as a lot of smart people on this forum Because who would know better than the people that have experienced ALS....
There is probably a TON that I’m leaving out I have felt terrible for over a year with so many symptoms ,tests ,ER Visits , my head is still spinning so any questions I will be more than happy to answer.
I truly appreciate any insight !