Help I'm scared

[DY56]

Hi I was a typical 56 year old female healthy just retired in April and enjoying life golfing 4-5 times s week

At end of July I just had this feeling of malaise come over me. I never felt like that before. I noticed I had been really stuffed up for a couple months because of the record rain we got in those months.
I went to sask sug 11-15 still felt my brain was outside my body but I managed to do things. I was having pains in my sternum and below rib cage. I was nauseas and lost my appetite. I had numerous tests on my stomach and paid for a cat scan. All came back normal. Once I came home from sask I started noticing my legs and arms going week and now I have muscle atrophy. I find this has also attacked my cognitive thinking which has stopped me from doing things. I'm agitated and can't focus. I feel my swallowing is starting to go as well. I just fear I have the worst progressive that has effected my cognitive. I seen an internist a couple weeks ago who sent me for all kinds of tests which of course we're normal. My puliminary tests were normal but I still have shortness of breath. I'm going to my dr today to see if he can expedite a neurologist as I can't see the internist for 2 more weeks

I am so scared and nobody is listening on how sick I am

 

[Atsugi]

Malaise == Not a sign of ALS. For example, my wife was quite active and feeling fine, even during the first several months after she had a solid case of ALS. Malaise has nothing to do with ALS.
Outside of body == Disassociation, likewise, has nothing to do with ALS. ALS people don't complain of feeling out of body.
Pain in sternum and below rib cage == Nothing to do with ALS.
Nausea, loss of appetite == Nope.
Legs and arms going weak and atrophy == Well, not really. In ALS, typical either a hand or a foot will lead off; it will be profoundly weak. That is, you'll have dropfoot or your hand will begin dropping things. When you say your "hands and feet" went weak, that doesn't point to ALS.
Cognition, mood, focus: No.
Swallowing: Pretty vague description.

You're definitely sick. But you have absolutely no reason to be thinking about ALS. You just retired? Shoulda seen me when I retired! You should ask a psychiatrist about Adjustment Disorder.

I wish you good fortune in fixing this, whatever it is. Again, stop thinking ALS. That's not it.

 

[DY56]

I lost weight and muscle atrophy in 2 wks I was very active to lose in 2 wks. I'm going back to internist next Monday. I feel my whole body under attack. I'm clenching my teeth, a wicked headache

 

[DY56]

It could have started in my breathing first would the next step be my legs and arms go weak together. I have the horse voice

 

[affected]

We have a post at the top of this forum section titled READ BEFORE POSTING.

Please sit down and read that whole post very slowly.

You honestly do not have a single symptoms of ALS, not one.

I hope your doctors get to the bottom of what is going on quickly tho as it is obviously very unpleasant!

 

[DY56]

Hi I read your post on symptoms. Maybe I haven't really explained what has been happening in my body clearly. I will post this and then you can tell me to go away or whether I should worry.

I have clinical weakness in my legs. I was getting a muscle cramp behind my knee into my calve earlier this year at night Once in s while. Now I feel that nerve behind my knee is spasticity. I can still bend it but I know it's there. I can still walk on my heals and toes but I sure can feel fatigued when I do it, I feel my hands are getting weaker but so far can still pick up things. I definitely can feel twitching in mostly my legs but other places occasionally arms and back. My legs are achy. Extreme fatigue. This clinical weakness came on in the last couple weeks. I Had this weird feeling from my armpits down to my groin and then my body would feel weak . Once my weakness came on it seemed overnight I lost muscle mass it looks the same loss on each side. I have had breathing problems with shortness of breath can't lay down on back. Had puliminary tests which came back normal. Right now I'm on antidepressants and sleeping pills so my breathing is better. My swallowing is as such with me swallowing saliva with my tongue I can still swallow. I have totally lost my appetite and lost 8 lbs all in over a month. I pretty well have been not able to carry on a normal life since this all happened. Can ALS hit this hard all at once?

 

[Nikki J]

You have not described clinical weakness. You state you feel fatigue when you walk on your heels and toes. That is not clinical weakness. I have clinical weakness in one leg ( which is the usual way things begin one place not many) I can not walk on my toes or heels with that leg. When the doctor examines me and puts her hand under my foot and asks me to push ( like step on the gas) nothing happens. That is clinical weakness. I do not feel weak at all and continue to think if only I try harder it will work. I do not ache either

 

[DY56]

I understand that but can't the weakness I have progress to what you have. I haven't been able to do everyday chores for some reason something in my body or mind won't let me. I am trying to do exercises for my legs and arms each day.

 

[Atsugi]

DY56, thanks for posting details.

Let me explain a little bit about ALS, in a rather simplistic way. This is really important to know. This disease operates in a specific manner. First, it's not a muscle disease; it's a brain disease. In the brain, ALS will kill a certain type of motor neuron, then another, and another, until all of that type of motor neuron have been destroyed.

The type of motor neuron is the voluntary motor neurons. These are the ones that send the 'go' signal to your big voluntary muscles like arms and legs. Note that they are destroyed one at a time, in series. So for instance, your foot becomes useless, then your lower leg, then your upper leg, and it moves up. Eventually, it hits all your legs and arms and more.

Also note that ALS does NOT involve the sensory nerves that feel feelings. So it does NOT make you hurt, ache, feel tired, fatigued, or any other feeling.

This takes time. It doesn't strike all over all at once. And it takes a lot longer, maybe years, to progress through the whole body.

My wife had an unusually rapid case. Unusually fast progression. One day, her foot wouldn't hold her up. The next month, one leg and a hand did not move. Then the third month, the other foot wouldn't hold her up, so she needed a walker, then a wheelchair. Note that none of this involved any feelings. No pain, no fatigue, no exhaustion, no getting tired. No "feeling weak." The muscles just don't go. There is no feeling of weakness.

I hope that helps you understand why we, who have much experience with ALS, are assuring you that, although you have some kind of problem, it certainly isn't ALS.

 

[DY56]

Ok one more question and I will go away. What if it happened first in my breathing. I was so stuffed up and nasally more then ever before for a couple months I thought my breathing was from just being so stuffed. Then I got the diaphram pain and sternum then shortness of breath then couldn't lay flat to sleep. Then my shortness of breath was all day but worse in evening. I say I'm medicated right now so don't know if the meds have suppressed my breathing which is probably not a good thing but calms me down. Not sure if your puliminary tests come back normal but can still have carbon dioxide that is making me short of breath. I also have a pounding headache on my forehead all the time.

 

[FamilialALS?]

Still not ALS. Do any of us know what this exhaustive list of symptoms IS from? Of course we don't, we aren't doctors. We just know it is not ALS. In our world that's about the best thing you could hear. Work with a doctor that can examine you and get to the bottom of what is causing you to feel these things.

 

[Atsugi]

No. ALS is about muscles that don't work because the brain is not sending a "go" signal to them.
You're still writing about pain, headache, pain in your diaphragm and sternum.
Good luck with your doctors.

 

[WendyWooG]

If you had clinical weakness affecting your respiratory muscles your pulmonary tests would not come back negative.
Wendy

 

[DY56]

Thanks everyone for your feedback I much appreciate it. I am still scared until I know for sure what is happening to me but I will work with my doctors.

 

[DY56]

I woke up during the night and could not breath again. My chest was so tight. This is what's been happening. I can't lay down at night or I can't breath. I know you say not ALS but I have so many symptoms it's scary especially my breathing and my legs. When I walk I feel my feet are getting so stiff.