bulbar symptoms?

[briana]

Hello,
As I mention in my previous posts, my sister was recently diagnosed with ALS.
Initialy she was in denial; now she is very depressed and refuses to get any help.
Her initial onset was in her arm; over the last few weeks she started choking on water.
In addition she complaints of headaches and pain aroung her TMJ on one side, referring into her throat and tongue. No obvious speech problems that I can detect during our phone conversations (we are 300mi apart).
Could this TMJ like pain, pain in throat and headaches be related to ALS?
My sister is single and I'm so afraid that she is not taking care of herself.
Briana

 

[Erica]

Hi Briana,
Sorry about your sister' progression.
Please research this forum for the Emotional Lability thread. It would be helpful if you get your sister to see a a psychologist, or a trial of antidepressant might need to be discussed with her doctor.
Regarding your question on the TMJ pain. I don't have TMJ; I've some swallowing problems and recently developed a feeling of a "cotton ball" in my throat. Sometimes when I drink it feels like my throat is numb.
Best wishes,Erica

 

[halfin]

Hi Briana, certainly it would be worth bringing those issues up with your sister's doctor. I am sorry for the hard time she and the rest of your family are going through. It is scary when you first feel changes happening and you know that things are not going to get better. Hopefully in time she will begin to adapt and feel more able to deal with what is happening.

As far as her symptoms, I do not have TMJ but I often get yawning spells. Each time, my jaw clicks. I think if I had TMJ this could make it worse. You might ask if she is yawning more. Headaches don't usually happen but I have heard that waking up with a headache can be a sign of breathing problems at night. If they are happening more during the day then I might wonder about stress and tension headaches, which would certainly be understandable in her situation.

 

[hopingforcure]

Briana,
I have similar jaw problems. I have had tmj for years, and this stuff has just put it into over-drive. I think with spasms, spasicity(the super brisk jaw jerk, and such can really make this stuff worse. Does your sister have any family near her? any good friends or someone that can kind of check on her physically? Does she go to a clinic? Welcome,sorry you had to find us.

 

[katterine]

Hi, I think I can help PM me?

 

[joelc]

It will be awhile before anyone can PM you.

 

[paleshia]

thanks for looking after us joel

 

[dnoelle]

Hi, I am so sorry about your sister. My mother was diagnosed with ALS 9 months ago, although her symptoms go back several years. I was hoping that someone could help me with this particular question. My dad just called after my mother's eye appointment. She has never worn glasses except for reading glasses the past few years. My dad said the doctor told them my mother's vision was very bad. 20/200! She had been complaining that she couldn't see the TV etc. Everything I've read about the disease so far indicated that vision wasn't affected. Is this related to her disease. 20/20 to 20/200 seems very bad in one year to me. I know I shouldn't blame everything on the disease but it's hard not to when it is this sudden. She had a bulbar onset if that makes any difference. Please respond if you can :-? dnoelle

 

[BethU]

dnolle ... I have had significant vision problems since my bulbar symptoms began, and know of other bulbar-onset patients who have, also. My vision began deteriorating at the same time as my speech. I have double vision, which has still not been corrected, plus have gone through four prescriptions in the last two years for dramatically failing sight. I know part of it could be a natural aging issue, but people much younger than me have reported the same problems. And my double vision is certainly not a typical aging problem.

I have started putting my vision problems back on my list of "changes" when I go to the neuro clinic. The last time (two weeks ago), my neuro shrugged and said (again), "Not ALS related!" I'm just going to keep telling them ... my vision problems began when my bulbar symptoms did, it has progressed along with my bulbar symptoms, and I'm not the only one. (If it quacks like a duck ...)

So sorry about your mom. Pass the word along that she's not alone.