Back again, update on concerns, happenings, and seeking help.

[Hithro]

Hello everybody,

Last time I posted, I was concerned about possible bulbar als and told that my symptoms did not sound like ALS and to come back after I have seen my neurologist. Well my neurologist happens to be part of my family and I have recently spoken with her.

Although it make me happy to hear her say that I did not sound like an ALS patient because I have no slurring or a "bulbar voice", I tried telling her about my arising symptoms and was dismissed as I am no longer even being taken seriously. I have developed sleep apnea over a very short period of time and wake up and random times and random days with a gasp or snort for breath. When i mentioned this to my neuro she did not even bat an eye as I am just being looked at as a crazy person now.

Upon my return home, my mother said that I should not worry anymore about ALS or I would be removed from college as we cannot even afford getting an EMG to dispel my fears. My sleep apnea has not gone away and I cannot sleep lying flat. I cannot go to any doctors or say anything about my health anymore as I will not be heard. I am going nuts with fear as I have seen articles of people having sleep apnea as a very early symptom of ALS, but there is nothing I can do about it. I would appreciate any opinions or information on sleep apnea, as this site and the kind, helpful members of it seem to be the only way I can get a solid opinion right now. It has come to a point where I have accepted that if I am dying of ALS there's nothing I could do anyway, and am watching my breathing get worse in silence as I get fatigue and drowsiness during the day because of the sleep apnea.

Any thoughts or comments are appreciated as this has caused me a lot of stress, and I would like to know if it sounds like any initial ALS cases anybody has heard before (the article where i read about apnea as a very early symptom was on als.net). I am only 18 years old and really want to do a lot with my life, I am strongly hoping it is not cut short. Thank you for your time and help

 

[affected]

Honey honestly sleep apnoea is as much a worry for ALS as if you said you have a headache so it must be brain cancer. Yes people with brain cancer suffer headaches, but hardly anyone with a headache suffers brain cancer.

SO hardly anyone, and NO ONE at 18 years old has ALS because they have sleep apnoea. Sleep apnoea however can be treated and you should follow that path, but a neurologist does not work with this so back to your PCP.

I hope you can be helped to calm down - please realise the members here are either dying of, caring for, or coping after the death of someone with ALS. I watched my husband actually die of bulbar onset ALS - you are being told reliably and truly that you are not presenting with this. Please go get help, but please respect that we can't give you any further help.

 

[Hithro]

Honey honestly sleep apnoea is as much a worry for ALS as if you said you have a headache so it must be brain cancer. Yes people with brain cancer suffer headaches, but hardly anyone with a headache suffers brain cancer.

SO hardly anyone, and NO ONE at 18 years old has ALS because they have sleep apnoea. Sleep apnoea however can be treated and you should follow that path, but a neurologist does not work with this so back to your PCP.

I hope you can be helped to calm down - please realise the members here are either dying of, caring for, or coping after the death of someone with ALS. I watched my husband actually die of bulbar onset ALS - you are being told reliably and truly that you are not presenting with this. Please go get help, but please respect that we can't give you any further help.

Hello Tillie,

Thank you very much for your reply. Although I have been choking on some foods and noticed I have a deviated uvula recently, I have been doing good convincing myself that bulbar is not possible because of my age and statistics. This has helped me calm down, but some symptoms from my earlier posts got worse, as I feel odd walking and stumble when moving across my house. My leg reflexes also seem very easily triggered/excitable especially on left leg, which is smaller than the right one.

However, all this aside I will take your advice. I will go to a GP and try to be objective about what is happening to me. I will have my reflexes tested and ask if a neurologist referral is truly necessary. Although it is frustrating that I cannot afford an EMG and therefore cannot put all this to rest, I will try my best to find a solution to this. Still scared, but staying positive. Thank you for all of your help throughout an experience I really wish I wasn't having during what used to be the best years I had in my entire life.

 

[lgelb]

If you want to know if you really might have a sleep issue, take the Epworth inventory on line. If you "fail," your PCP can order a sleep study and a used CPAP really costs very little if you truly have apnea.

Otherwise, Google "sleep hygiene" and follow the advice.

If you feel anxious, that the room is stuffy, a $10 fan can do wonders. And meditation before bed is free!

I am not making light of your fears, but as others have said, the odds are greatly on your side.

Best,
Laurie

 

[Hithro]

If you want to know if you really might have a sleep issue, take the Epworth inventory on line. If you "fail," your PCP can order a sleep study and a used CPAP really costs very little if you truly have apnea.

Otherwise, Google "sleep hygiene" and follow the advice.

If you feel anxious, that the room is stuffy, a $10 fan can do wonders. And meditation before bed is free!

I am not making light of your fears, but as others have said, the odds are greatly on your side.

Best,
Laurie

Hello Laurie, and thank you. However I am sad to inform that today I have found something that may not be good news for me. When looking for what felt like a mouth sore on the mirror to see if i should buy medicine for it, I noticed something. A very small, very fine twitch on my upper lip. I have experienced BFS and when i moved the twitches went away. However, this is a twitch I cannot feel, it is very fine , and constant and rhythmic. This has made me feel horrible. I can't speak up about it as my family will only punish me and not take me to the doctor, and we cannot afford an EMG. This constant twitch on my right upper lip matches with the very slight lip weakness and a new dent that forms on my cheek when i open my mouth, all on the right side. I am losing hope by the second. I cannot believe I have to go through this at age 18, I am terrified. I appreciate any further thoughts, and thank you for all your help until now, all I can truly do is wait, and it's eating me alive.

 

[Hithro]

If you want to know if you really might have a sleep issue, take the Epworth inventory on line. If you "fail," your PCP can order a sleep study and a used CPAP really costs very little if you truly have apnea.

Otherwise, Google "sleep hygiene" and follow the advice.

If you feel anxious, that the room is stuffy, a $10 fan can do wonders. And meditation before bed is free!

I am not making light of your fears, but as others have said, the odds are greatly on your side.

Best,
Laurie

Hello Laurie, thank you for your help. However, it highly pains me to say that I have made a discovery today that has drained me of hope. While I was checking the mirror for what seemed to be a mouth sore, I noticed a small, fine, constant twitch on my right upper lip. Unlike my BFS twitches, I cannot feel it, it does not go away when I move, it is constant, and is only on the right side. This matches up with the new dent on my cheek when i open my mouth, and my slightly weaker upper lip. I am now terrified of what the future holds, and cannot speak up about it as nobody will believe me and we cannot afford an EMG. Ever since finding out about that today, I've been in constant horror. I do not know what to do anymore, I feel trapped. Thank you for all of your help, and any more advice would be appreciated, anything at all helps, even if you must be brutally honest about this change in my odds.

 

[Atsugi]

Your family neurologist didn't take you seriously???

Think about that. An expert in ALS, who knows you, who has actually seen you, believes that your claim to ALS is not to be seriously considered.

Neither do we. We know ALS better than any internet site and you're not describing it. You might think you're exactly describing ALS, but I will tell you that with each "symptom" you post here, you almost get it right--but you don't.

You're not the first college student to have a nervous breakdown. You are killing yourself with your imagination and refusing to take it seriously.

 

[lgelb]

Hithro, my cheek/lip twitches/throbs when I'm tired. When you are stressed, aren't eating or drinking properly, the same effects can occur as these factors are making you tired, if only "inside."

Do the things that make you feel better, as if you did not feel ill or anxious, and you should feel better. But you're in the wrong place here -- a very good thing.

I don't think an EMG would end your fears -- you would find another reason to think about ALS. In all honesty, I would find a sliding scale mental health clinic in your community if funds are an issue, and work through why you are having these fears and how you can keep them at bay. Your college has a counseling center, most likely, that can get you started with the process and refer you for next steps if needed.