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belletaine

New member
Joined
Nov 8, 2013
Messages
2
Reason
Learn about ALS
Country
RU
State
Russia
City
Omsk
Hey everyone. Sorry if my post gets too long. I'm here to ask your opinion. I'm just gonna describe my symptoms to you, and I ask you to confirm my e-diagnosis. So I have:

Breathing difficulties: It's pretty bad. I can't get a decent breath in most of the time - it's like it's impossible to take a deep breath, it's rarely succesful. I can't breath with my nose at all, gotta keep the mouth open. My breathing is fast and loud because I just can't get enough air in. It's not asthma, like pulmonologists said, because it's not episodical and the inhalers don't work. My heart, which was already weak, is freaking out because of all this, I have fibrillations, tachycardia, arrythmia, pain. Sometimes it feels like my heart is gonna explode.

Swallowing and face muscles: It's getting hard for me to swallow saliva. Watery liquds and chewed food go in fine, but I still feel weakness in my throat muscles. It takes effort to swallow properly. And I tend to aspirate far more often than it was before. I can't swallow my own saliva properly, it kind of gets stuck in the throat, so I have to drink water all the time.
There are also constant fasciculations in my face (in other body parts too), and the skin on my face just feels weird, like dead meat. Jaw muscles feel weird, strained. And when I smile, the corners of my mouth twitch.

Speech: It's slurred, nasal and quiet. People often ask me to repeat what I'm saying. And I speak with frequent pauses because I don't have enough air in my system.

Arms and legs: Certain atrophy and weakness. My muscles look and feel like jelly. My calves used to be hard, but now they're soft as butter. I get tired very fast, can't even stand in place for too long. Walking feels like less of an effort than standing in one place. I can't carry even moderately heavy bags. And this atrophy progresses - a month before my legs and arms used to be stronger. Breathing and swallowing were better too. It all just gets worse every month.

I went to a neurologist a few months back, and she said that basically all is fine, even though I had slurred speech, breathing problems and visible atrophy. The thing is, I don't have my personal doctor, so I gotta go to a new one in hopes of a diagnosis. And I don't know how to explain all this. It feels like the doctors in my country (Russia) refuse to diagnose deadly conditions like ALS because a lot of the treatments are unavailable here, and there's no funding from the government. Or perhaps the docs in my city are just uneducated, I don't know.

I also appear to have some FTD symptoms. It often comes with bulbar form, right? I'm impulsive, it's hard for me to plan stuff and make decisions. I tend to swear and say socially inappropriate stuff a lot. My memory has gotten a lot worse than it was 6 months before.

Also, I had 3 concussions in my life, and every time I fell on my forehead. Can this trauma cause ALS or symptoms of it?

So, my questions are:

1. Is this ALS? If not, what can it be?
2. Do I need to go first to a general doctor or straight to the neurologist? How can I present it all to a new doctor so he can study me properly and make a diagnosis? Doctors in my country in general aren't very nice or thorough in their practice. Maybe it's because of low wages, I don't know. They just don't seem to understand me.
3. How can I get breathing and feeding tubes if there's no special ALS clinics? Is it possible to set all this stuff up at home with the help of a professional? How much would it cost?
4. Can head trauma in childhood trigger symptoms like these?


Sorry if my post is too long or weird, I just need some help. And please don't say "it's all in your head", I'm tired of that crap.
 
Are you quite certain your neuro actually missed slurred speech and compromised breathing? Those are quite obvious symptoms and more immediately apparent than your heart ailments.

What do your parents think? Why not seek a second opinion for your peace of mind? Just a wild guess, but I believe most people with FTD are not aware of it.

Just so you know (and it's not crap) health anxiety is absolutely debilitating and can cause many of the concerns you have enumerated. And it's entirely fixable! If you don't think it's anxiety, and your parents or GP concur, suggest you make contact with Dr. Gleb Levitsky, (neurologist) Russia ALS Charity Foundation. He may be able to help you.

Good luck to you.
 
Are you quite certain your neuro actually missed slurred speech and compromised breathing? Those are quite obvious symptoms and more immediately apparent than your heart ailments.

What do your parents think? Why not seek a second opinion for your peace of mind? Just a wild guess, but I believe most people with FTD are not aware of it.

Just so you know (and it's not crap) health anxiety is absolutely debilitating and can cause many of the concerns you have enumerated. And it's entirely fixable! If you don't think it's anxiety, and your parents or GP concur, suggest you make contact with Dr. Gleb Levitsky, (neurologist) Russia ALS Charity Foundation. He may be able to help you.

Good luck to you.

Well I told my neuro about breathing problems, she shrugged it off. And they are quite visible, I often make deep breaths while holding on to different things cause it's easier that way. My speech isn't as slurred as you may think. I only had one episode, when under cold rain my jaw froze so bad that I really was unable to utter any recognizable words.
Attributing all symptoms to nervous disorders and prescribing generic drugs seems to be a common mispractice among doctors.

My parents are just too afraid of this being something serious, knowing that there's no help available in our... undeveloped city for people with such conditions. I don't even want to talk to them about this because I don't want to further upset them.
That FTD suggestion I made is really a big maybe. But I don't think that mentally ill people can't be aware of their conditions. Even schizophrenics often are.

Health anxiety? Seriously? As debilitating as it may be, it does not cause fasciculations all over your body make people suffocate so hard that their eyes become decorated with red lines, lips dry and darkened.

Not sure how Dr. Gleb is supposed to help me, since he most likely lives in Moscow. And his forum consists mostly of religious posts... Not sure what to think...
 
" Health anxiety? Seriously ?"

Yes.

Yes, anxiety can and does mess people up. Our mind is connected to our body. One affects the other. If I were you, I would seek a second opinion. Maybe Dr. Levitsky has an email? He teaches other neurologists, so maybe he taught one from Siberia and would give you a name?

I seriously doubt you will find the answers you seek on the internet. Keep looking for answers from and with your doctor. I think it's safe to take ALS off your radar for now - you are jumping to conclusions. Your parents are more resilient than you may think. As a parent, I can assure you we worry less when asked to help than when we're kept in the dark.
 
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