Chances of Bulbar Onset ALS in 34yo Female

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CollsMaroon

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I really can't get over this hoarseness = bulbar onset nasty. You have all been great in your reassurance of the voice issue likely being related to reflux, allergies, or both. But, I have some follow up questions/worries. 1. I know that bulbar onset happens approximately 25% of time. I know that having the disease whatsoever under 40 is fairly rare. So, for a female, age 34, my odds are slim, yes?2. I have often read that folks with bulbar onset find their symptoms worse at the end of the day (though admittedly I've only read that in connection with slurring). I'm convinced that my hoarseness is at its worst near bedtime...should I be scared?3. Sometimes the hoarseness is helped with throat clearing. Would this be the case, in the case of the nasty?4. Will extreme worry/anxiety make the issue worse?5. The hoarseness kicks in the most when I try to sing a high note - my voice cracks like that of a boy in puberty. I keep thinking, oh no, bulbar is slowly starting with the high notes and working its way down. Does this make sense?I will say this - before being über worried about this starting a week or two ago, I really noticed only very intermittent hoarseness, which really seemed to be related to when my throat became very dry. Since then, it's increased so much...is it possible that the worry has caused the reflux, and that has caused the voice issues, and the crappy cycle just keeps going round??Thanks to anyone who reads, and defi Italy anyone who responds!
 
Hello,among the allergy (which could be the case in BFS and could be realted often to home allergenes, which are extremely hard to avoid, like micro insects living in the home dust) and reflux, there could be a zillion of other cases for voice hoarseness, not related to any bulbar onsets etc. For example, it could be thyroid. Hormonal changes oftern cause vocal cords to swell and make the voice a bit hoarse.For any problem with working muscles - and vocal cords are vorking a lot usually - at the end of a day they are surely much tired.I suppose after your initial fears of bulbar onset you are trying to speak loudly or sing a songs maybe daily, maybe even few times a day?If so - do you understand that this is the same self-test we must avoid and in fact that it might bring you from occasional hoarseness to a constant one due to the fact your vocal cords are just overloaded?Extreme anxiety and worries definitely makes the issue worse because it causes vocal spasms. unless you do not have other vocal issues, like loss of voice tone and ability to regulate volume deliberately, slurred toneless speech, etc. etc. - please do not think about rare onset of rare disease. Please remember that in BFS we have excersie intolerance - and vocal cords might also experience it, however it is not weakness. Please stay out of voice tests for 3-4 days and see if you voice would be improved.For me the fact that throat clearing helps indicates rather natural swelling of VC, caused either by hormonal infulence or extreme anxiety, or (like it happens to me) - by hot drinks or certain food (however I would not say it is an allergy), or excessive mucus production in the throat which might be a result of hyperexcitable NS too - still withing BFS profile.I remember that in my childhood, when I was used to have pharingitis for every cold I got, one of the best ways to bring my voice back was cocoa butter in warm milk. I do not know if you may try it (cocoa butter might be an allergen), but if you do not have an allergy, you might try maybe. Cocoa butter has no theobromine in it, so it is not a chokolate, and you need just a sall piece per cup of warm milk. Maybe that would help - it is pleasant drink, good to have before getting to bed.
 
Thanks for the reply.Everything else seems to be fairly normal, it's just the hoarseness. And I have been testing it, you're right.From my reading, everyone who had a hoarse voice with the nasty seemed to have other issues too, like you mention. Slurring was almost always there, along with weakness in voice and tired after speaking.
 
I have had hoarseness of varying severity, along with other strange voice issues, for 6 weeks now.Mine is accompanied with a "reedy" vibratory quality to my voice that comes and goes (like it was bad this morning and now, at 4 pm, my voice is nearly back to normal), and sometimes the pitch of my voice is slightly higher. My family has confirmed these changes. And I am right there with you with the bulbar fear. I totally understand. Add the jaw tightness and the excess mucus in my throat, the tongue cramping and twitches, and I am ripe for a nervous breakdown. Today was one of those days for me. I am terrified more often than I am not lately, and that really just sucks.The fear is honestly the worst, isn't it? I wish I could help you feel better, but all I can do right now is say that I totally get how scared you are. At 34, I think your odds for bulbar are pretty much non existent.
 
I've had times when my voice is hoarse... Never thought about it, we're hyper-sensitive. All week at my work people have been coming in my work with Hoarse voices, allergies, etc. Tis the season!!!
 
Doubtful.To make us both feel better, I really do think that we would have other issues accompanying the hoarse voice, like slurring or swallowing problems.Let's compare - how many neurologists have you seen over the last year? I'm at three, and five EMG tests! I always like to throw that out there to see if I'm the most scared of the scared on the site, and I think I usually am :)
 
Well kudos to you for not running to one. I don't think jaw tightness is anything. Infact, what it probably is, is you being so stressed out, you're clenching your jaw (either awake or asleep), causing it to feel either achy or tight. I did that in the fall. And the twitching is nothing to worry about. Think about it this way, if twitching means a problem, your tongue wouldn't be functioning properly, which it always is. Remember, problems first, twitching later. I always feel happy, actually, when something twitches and is still working properly because I'm able to reassure myself that it is, thus, BFS. Do you have acid reflux or allergies? Currently, these are the two explanations that (somewhat) talk me down from a bulbar ledge. However, I still teeter.
 
I have not been diagnosed with reflux. I could have it, but no dx. I do have seasonal allergies, but I have no other allergy symptoms right now, so I am not sure if that is something I can factor in as a cause.
 
Really, no scratchy throat, itchy eyes, anything? My throat kind of burns on and off, itches (especially if I yell), and I consistently feel like a post nasal drip happening. Apparently there is a specific type of reflux called LPR that is different from your run of the mill reflux...causes symptoms like increased mucous, itchy or sore throat, hoarseness, and a bunch of other things.Over the couple of months you've had the hoarseness, has it gotten any worse?
 
Then I'm sure it hasn't. And you should really read about that kind of reflux I was talking about LPR. To me, it sounds like that. Update, I went to see my neurologist today, and basically broke down into a crying mess over everything. First, he assured me I was fine, said my voice sounded fine to him, but that it didn't matter, because I was fine. He said I can keep coming in, and he will keep telling me the same thing.I tell you this to show you exactly how far the anxiety can go, and to try to encourage you not to go any further down this road. After seeing so many doctors and having so many tests, I'm really no further ahead than are you.
 
Um, yes, those are trademark things! Before I found out I had reflux in the fall, that was exactly what I was going through - feeling as though there was always food stuck.I find that when I try to sing, though I'm not a singer at all, my voice really breaks at the high notes.
 
Hi beausoleil,i would say first you may try milder means like renny or maalox, because prilosec is reported here af a substance increasing twitches. Diet and relax also help. Try them first, prilosec is rather second line treatment :)
 

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