Raine
New member
- Joined
- Jun 20, 2017
- Messages
- 1
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- Other
- Country
- US
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- California
- City
- santa clarita
So, Ive been worried about the possibility that I have ALS. Increasingly extensive research has only reinforced this in my mind. Im 24 and I've been experiencing fasiculations for about 4 months. They arent localized and have been all over with varying intensity (oftentimes the ones in my neck are the most intense). All the while I've felt that my physical abilities have declined. Its difficult to say because i wasn't very fit before, but I've been getting tired out from doing things Id normally do and feel as though I'm straining my body more.
Some examples: I cant run short distances without becoming out of breath. I remember there was this time back in April when I was at an MTG prerelease and felt anxious so I went outside to have a quick run around the building to let out some stress. It was frightening as I felt as though there were weights strapped to my legs holding me down. I used to frequently run around outside and listen to music to deal with my anxiety but because of how quickly I get tired now I don't as often. I become out of breath extremely easily, even just from walking up one level of stairs. My arms seem to get achy and tired when I'm lifting them up to type or for striking a pose. It just feels that my body is much heavier overall, like the effects of gravity feel much stronger (despite not being overweight and not gaining pounds recently)
Ive also had food getting caught in my throat while swallowing. Like, ill need to swallow twice to get something down. Also (unrelated), my muscles tend to shake when i flex.
IVe also heard that ALS can cause cognitive and behavioral changes as well. For me, it feels like lately I cannot stick with one thought for a very long time and planning things stresses me out. I lose track of things much more easliy than i used to. It seems every day I go through more than a dozen different ideas but lose them the next day (and sometimes within minutes). Even this post is an example of this. Im struggling to think ahead and am only typing out whats immediately on my mind. It gets to the point where I disengage from social situations because of how difficult it is for me to articulate my thoughts. This is causing me considerable distress as i feel as though i cant properly communicate whats afflicting me.
I feel as though Im experiencing a loss of executive function, like suddenly I have ADHD (before I was much better at planning things out and delaying gratification). I initally blamed this on societal influences gradually getting the better of me (instant gratification through the internet, fast food, etc) but now am wondering if it isnt because something is wrong with my brain (because of the forgetting as well, i initially wondered if i had a form of dementia such as Huntintons disease--then later realized this wouldnt be the case because i wasnt experiencing chorea and also i believe the progression is much slower).
Theres an anime, as well as several movies i enjoyed less because i had trouble following the plot and keeping up with what was going on. This has never been a problem for me before. I know you'll cite stress as being a distraction but several of these times i was relatively relaxed and it was the difficulty in comprehension that brought on the stress. Usually any stress I experience through media doesnt affect my ability to understand whats going on.
My PCP told me that ALS is an old persons disease while also very rare. This is somewhat true, but it did nothing to alleviate the anxiety of my symptoms. With enough pressing I eventually got to see a neurologist.
My neuro came off as incredibly dismissive and arrogant, telling me that its unlikely that I would have ALS and that there was no point in pursuing a diagnosis because if I had it there was nothing that could be done. In my mind, the perspective of knowing I am going to die at a young age is important in sculpting my actions. I don't want to look back several months down the line when I've lost most function and think that there was more that I wanted to experience in life.
He did some testing for MG and Autoimmune diseases and they came back negative, though I did have a B12 deficiency which I was prescribed supplements for (and have since had my B12 normalized with no improvements for the fatigue and fasiculations). I pressed to have an emg and he complied despite doubts.
So I was given the EMG/NCV about a week ago and just had a followup where he said there weren't any abnormalities detected. My problem with this is he mentioned the Ncv as being clean and seemed to conflate the nerve damage it detects with ALS. I have looked up NCV and they only detect an abnormality in 10% of ALS patients. Plus, the emg portion was intramuscular and only lasted about 20 minutes. Just because I didnt have any fasiculations then doesnt mean I'm not having them. Nothing about the visit was reassuring and I almost had a nervous breakdown.
It feels as though I'm living in this alternate reality where I'm the only one who recognizes the shifts in my body's function. I live with my grandma and am relatively cut off from the rest of my family (barely know my dad, no connection to his side of the family, moms dead, moms side relatives are few, and live far away) so I don't have much support.
I dont know what to do, and i feel completely powerless. When Im in front of an authority figure especially I feel as though I dont have a voice. I just dont want to brush what im feeling off as nothing and then realize months later that because i didnt push hard enough i lost several months of life (the newly approved drug works best on those in the early stages of the disease).
I want someone who's dealt with patients with ALS before, who could detect minute changes in my muscles beyond a simple strength test (which isn't going to do anything until a significant loss of function has occured). Ive heard that the greatest reason people don't get an early diagnosis is because they are referred to the wrong people, and by the time its obvious they have the disease its too late to do anything about it. He said He'd refer me to another neuro for a second opinion but not to a specialist.
I felt compelled to post pictures of what i believe to be atrophy but wont. I just feel like it wont matter. Ill probably get the response of "well im not a doctor so i wouldnt know" or worse "thats normal because of xyz" or even that it might make people uncomfortable. There shouldnt be any harm though right, i just feel so paranoid about my decisions regardless.
I'm even thinking right now that this post is either too long for the purpose of sharing or not long enough in that I'm leaving out important details. Either way I'm afraid of posting, and also of not posting and being stuck in my own head. I initially wanted to post here back when i first started having symptoms but decided to wait until after I saw the neurologist. I didnt want to just be another person with anxiety freaking out about something i didnt understand. I dont feel any better now though and dont know what i should do...
Some examples: I cant run short distances without becoming out of breath. I remember there was this time back in April when I was at an MTG prerelease and felt anxious so I went outside to have a quick run around the building to let out some stress. It was frightening as I felt as though there were weights strapped to my legs holding me down. I used to frequently run around outside and listen to music to deal with my anxiety but because of how quickly I get tired now I don't as often. I become out of breath extremely easily, even just from walking up one level of stairs. My arms seem to get achy and tired when I'm lifting them up to type or for striking a pose. It just feels that my body is much heavier overall, like the effects of gravity feel much stronger (despite not being overweight and not gaining pounds recently)
Ive also had food getting caught in my throat while swallowing. Like, ill need to swallow twice to get something down. Also (unrelated), my muscles tend to shake when i flex.
IVe also heard that ALS can cause cognitive and behavioral changes as well. For me, it feels like lately I cannot stick with one thought for a very long time and planning things stresses me out. I lose track of things much more easliy than i used to. It seems every day I go through more than a dozen different ideas but lose them the next day (and sometimes within minutes). Even this post is an example of this. Im struggling to think ahead and am only typing out whats immediately on my mind. It gets to the point where I disengage from social situations because of how difficult it is for me to articulate my thoughts. This is causing me considerable distress as i feel as though i cant properly communicate whats afflicting me.
I feel as though Im experiencing a loss of executive function, like suddenly I have ADHD (before I was much better at planning things out and delaying gratification). I initally blamed this on societal influences gradually getting the better of me (instant gratification through the internet, fast food, etc) but now am wondering if it isnt because something is wrong with my brain (because of the forgetting as well, i initially wondered if i had a form of dementia such as Huntintons disease--then later realized this wouldnt be the case because i wasnt experiencing chorea and also i believe the progression is much slower).
Theres an anime, as well as several movies i enjoyed less because i had trouble following the plot and keeping up with what was going on. This has never been a problem for me before. I know you'll cite stress as being a distraction but several of these times i was relatively relaxed and it was the difficulty in comprehension that brought on the stress. Usually any stress I experience through media doesnt affect my ability to understand whats going on.
My PCP told me that ALS is an old persons disease while also very rare. This is somewhat true, but it did nothing to alleviate the anxiety of my symptoms. With enough pressing I eventually got to see a neurologist.
My neuro came off as incredibly dismissive and arrogant, telling me that its unlikely that I would have ALS and that there was no point in pursuing a diagnosis because if I had it there was nothing that could be done. In my mind, the perspective of knowing I am going to die at a young age is important in sculpting my actions. I don't want to look back several months down the line when I've lost most function and think that there was more that I wanted to experience in life.
He did some testing for MG and Autoimmune diseases and they came back negative, though I did have a B12 deficiency which I was prescribed supplements for (and have since had my B12 normalized with no improvements for the fatigue and fasiculations). I pressed to have an emg and he complied despite doubts.
So I was given the EMG/NCV about a week ago and just had a followup where he said there weren't any abnormalities detected. My problem with this is he mentioned the Ncv as being clean and seemed to conflate the nerve damage it detects with ALS. I have looked up NCV and they only detect an abnormality in 10% of ALS patients. Plus, the emg portion was intramuscular and only lasted about 20 minutes. Just because I didnt have any fasiculations then doesnt mean I'm not having them. Nothing about the visit was reassuring and I almost had a nervous breakdown.
It feels as though I'm living in this alternate reality where I'm the only one who recognizes the shifts in my body's function. I live with my grandma and am relatively cut off from the rest of my family (barely know my dad, no connection to his side of the family, moms dead, moms side relatives are few, and live far away) so I don't have much support.
I dont know what to do, and i feel completely powerless. When Im in front of an authority figure especially I feel as though I dont have a voice. I just dont want to brush what im feeling off as nothing and then realize months later that because i didnt push hard enough i lost several months of life (the newly approved drug works best on those in the early stages of the disease).
I want someone who's dealt with patients with ALS before, who could detect minute changes in my muscles beyond a simple strength test (which isn't going to do anything until a significant loss of function has occured). Ive heard that the greatest reason people don't get an early diagnosis is because they are referred to the wrong people, and by the time its obvious they have the disease its too late to do anything about it. He said He'd refer me to another neuro for a second opinion but not to a specialist.
I felt compelled to post pictures of what i believe to be atrophy but wont. I just feel like it wont matter. Ill probably get the response of "well im not a doctor so i wouldnt know" or worse "thats normal because of xyz" or even that it might make people uncomfortable. There shouldnt be any harm though right, i just feel so paranoid about my decisions regardless.
I'm even thinking right now that this post is either too long for the purpose of sharing or not long enough in that I'm leaving out important details. Either way I'm afraid of posting, and also of not posting and being stuck in my own head. I initially wanted to post here back when i first started having symptoms but decided to wait until after I saw the neurologist. I didnt want to just be another person with anxiety freaking out about something i didnt understand. I dont feel any better now though and dont know what i should do...
