Very rough 2 years

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Fightuntilucant

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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 !
 

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ShiftKicker

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Hi there-

Please make sure to read here: Read Before Posting

You've posted a long list of symptoms completely unrelated to ALS. I am guessing you looked up twitching, saw ALS and panicked. You are under the care of doctors who have provided you a pretty clear plan already and your diagnosis of CLL explains much of what you report. It sounds like you need to keep working with your doctors and maybe also find someone who can help you with the very valid anxiety that has come with a reduction in the activity and condition you are used to.

Take care
 

Nikki J

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I am sorry. It sounds absolutely miserable and very frustrating. It doesn’t sound like it will be ALS and your doctor’s thoughtful assessment sounds accurate. Are you being followed at one of the academic medical centers? With your complicated history it seems like that is where you should be especially as you may need a multidisciplinary approach to get to the root of your problems
 

Fightuntilucant

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Thank you so much for your reply I haven’t seen anyone besides the norm , oncologists, pulmonologists,neurologist etc o have asked for any and every referral but it seems like I get nowhere no matter where I turn yet I have many symptoms and I watch my body go from an extreme bodybuilder to a fraile fragile sick man yet I have no answers I’m praying it’s not this vicious disgusting disease but a lot of signs are pointing this direction yet the doctors give me a feeling if they have no idea or just wait until I fail then we will no for sure . I’m just lost right now .but many thanks anyone going thru this definitely didn’t ask for it I’m sorry got all that are affected.
 

Nikki J

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I would pick a set of specialists at one institution and stick with them. While second opinions are valuable if you have a complicated difficult to diagnose case if you go from doctor to doctor it will be hard to get an answer. I say this because you said oncologists etc in the plural

we are not at all denying you are ill just saying that your answer is very unlikely to be here
 

Fightuntilucant

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So I have read “read before you post “ before I ever posted several months i fact reading different things on here and on the web in general a lot of contradictions.
I just wanna keep my questions simple ...

is it at all possible to have atrophy and weakness before failure ? I can pretty much do everything as far as walking , Using my arms, etc. the only difference is I am extremely weak and extremely fatigued and tired every day. These conditions have got severely worse over the last year to year and a half. I had my EMG in October and it came back normal but my body physically by looks and how I feel tells me a different story.Fascilations have been going on for about six months.
They say 70% of the nerves die before you feel this weakness , So the order as I understand it would be -dead nerves>Failure>weakness ??? I’m not sure which order this should go but I have read that a lot of people say you will fail before you feel weakness ... is this 100% of the time ?? I just wanna make sure that’s correct and there’s no chance that this could be ALS
if there is a possibility maybe this is a rare case I’m just trying to fact check as best I can and I realize none of you are doctors I would just like your feedback. Thanks I’m advance
 

Nikki J

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All we can say is it doesn’t sound like ALS to us and apparently did not seem like ALS to a neurologist who saw and examined you.
I repeat my recommendation to work with a doctor at a university level medical center. that way they can observe changes over time without having to reinvent the wheel as happens when you go from doctor to doctor
 

johnny5

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Numerous people have had diverse symptoms after getting mRNA shots for COVID.

Did you get the jab? So many symptoms it is really impossible to say ALS has anything to do with it.

A neuromuscular specialist is the one you need to rule out ALS...which means they would need to rule in something else.
 

lgelb

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This doesn't sound like ALS (or post-vaccination issues) at all. But if your O2 is really dropping to 80%, you should be seen by a pulmonologist and screened for sleep disorders.

Best,
Laurie
 

Fightuntilucant

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Just wondering if anyone knows what it’s called when doing motor testing in other words if I test my muscle resistance in my arms or legs and my arm shakes a lot with any kind of resistance. Whether pushing pulling it’s all the same I shake a lot .
 

lgelb

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It doesn't matter what it's called -- you're trying to make shakiness or feeling unwell into some kind of malignant entity, and it most often is not. The notes from your doc pretty much call it -- anxiety feeds into the physical realm, which in turn reinforces the anxiety.
 

Fightuntilucant

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Hey everyone still waiting on more testing my second EMG coming up just wondering because I am extremely exhausted very tired still able to walk but my question would be do people with ALS have to go to a wheelchair or assistive devices because they always get drop foot or can it be you are you simply are too weak to walk anymore. The reason I ask is because I walk 10,000 steps a day it’s not easy but I make sure I do it just wondering if there will be a gradual decline to where it goes to 8000 6000 4000 then can’t walk Or wheel something just fail and that’s when you’ll know
 

ShiftKicker

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Hi there- it's important to not associate your issues with ALS unless a doctor states it is so. People with ALS utilize wheelchairs and assistive devices for a variety of reasons-fatigue being one. Please understand this forum is primarily for those with ALS and their caregivers. This subforum is only to be used for the most basic of questions- which have already been answered. If you've been advised to work with your doctors, that is who you must ask about your concerns.
 

Fightuntilucant

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With all do respect I’ve worked with my doctors 2 years of hell and repeated the same tests still No answers . Isn’t this forum ctbals for asking questions ?
 

ShiftKicker

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Only the most basic questions can be answered here- which you've been provided answers for above and been provided recommendations you continue working with your doctors and that your symptoms do not fit the pattern that indicates ALS (something that specialists also have stated). If you have not been diagnosed with ALS, yet are asking questions specific to ALS care, it means you are not seeking the appropriate care from your doctors and are utilizing resources that may not be appropriate to your needs.

We really do understand the frustration of being in limbo and trying to figure out what is wrong when there seems to be no immediate answers. However, an ALS forum does not seem to be the place to get those answers based on the above and on your doctors' exams and conclusions. Perhaps a referral to an occupational therapist who can assess your needs and provide you specific answers would be the way to go. They look at functional needs and not a diagnosis.
 
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