"Not Widespread"

Status
Not open for further replies.
Kid-Ali,

Yes, my swallowing difficulty has never been accompanied by any changes in my gag reflex. I have some difficulty initiating a swallow, and food sometimes doesn't go down easy. I have a persistent dry cough, and occasionally (though pretty rarely) some food will come back up.

An ENT will be able to examine you and scope your nose and throat looking for structural defects that might explain your problems. Warning though, the stuff they shoot up your nose is the devil's brew. The swallow study will help verify if the muscles are doing their job.

Take care,

Robert
 
Hi, Kid-ali ... I have mucho problems with swallowing, so maybe my experiences will help (or make things even more confusing).

1) First, about the vomiting. I have just recently learned that there is a difference between "vomiting" (where you eject food that has been partially digested in your stomach) and "reguritation," which is when food that hasn't made it to the stomach comes back up. I hope those definitions are correct. I have a LOT of trouble with reguritation ... I swallow something, and it explodes back out my mouth (and all over whoever is near me). SO ... in my own experience only, reguritation is a large part of my swallowing issues, but I have never vomited after swallowing something.

2) I get that tickling feeling in my throat, too, but it only leads to coughing spasms. But every individual is different.

3) About the tongue. Impressions of the teeth along the side of the tongue are pretty common, and are not related to ALS. I think all healthy tongues look pretty much alike: pink, smooth, maybe with teeth imprint edgings. I don't think my atrophied tongue is that much smaller than before (but, like you, I never took notes before the symptoms started, so it could be) ... where the atrophy is apparent to me is on the surface: my tongue is no longer smooth (still pink, though :)) ... the whole surface looks like an unpaved dirt road. Gouges, crevices ... just very heavily textured. I don't have to look for subtle signs, it is obvious at a glance.

Hope this offers some clarification, although with ALS, I've discovered that every question you get answered leads to three new ones.

P.S. I am also having a brand new symptom in swallowing in which I "successfully" swallow a bite of something solid, and everything feels fine ... no aspiration, no choking, so feeling of getting something stuck in throat ... but I can tell that the food isn't going to stay down. It made it out of my throat, but not into my stomach. So I just go to the kitchen sink and wait, and after a couple minutes the regurgitation starts, I start choking, and hang over the sink gagging till it completes its journey back out. All this is so freakin' strange ... but I have learned that many strange symptoms come and go. (And I'm sure they do in benign fasics, too) and I don't panic too much till it's been with me for many months.

Good luck.
 
Hi BethU

Thanks for the response. Well, now I'm more worried about ALS than ever. 24 years old, this is ridiculous. I'm almost certain I have this. What with the fascic's, difficulty swallowing, weakness, gag-reflex-regurgitation problems, a scalloped-scaly tongue, waking up in the morning with the feeling that I've ran 100 miles the night before and my muscles are so stiff and weak there's no damn reason for it. And it's not like it's been over a "short period of time" , like most would suggest - it's been nearly a year since first signs started showing up. Or is it too quick of a time period to develop all this stuff already? I mean wouldn't this throat problem/gag/regurgitation indicate Bulbar onset? Could be anything - but if it was ALS, wouldn't that suggest a fairly progressive form? I don't know, I'm confused. And sad.


also to clarify: when I the tickle feeling comes (like it's right here) - I cough and cough and cough - gag - puke - but most of the time (aside from yesterday, where it was all solid) the only thing that comes out is phlegm or liquid.

thanks.
 
KidAli ... I'm sorry I worried you more. That is the difficulty with this forum ... should one respond honestly and risk scaring someone more, or back off and give no response at all. I guess back-off is the best solution.

I have never heard of all these symptoms happening at once (and that includes over a year). If you had bulbar-onset, you would NOT be waking up with sore muscles (even if you have limb onset, you probably won't be waking up with sore muscles). ALS doesn't jump around like that .... it's not going to go from sore muscles to bulbar to some other area.

Here's the thing: bulbar onset does NOT NOT NOT NOT NOT begin with swallowing issues. In fact, swallowing issues POINT AWAY from bulbar-onset ALS. Bulbar onset starts with slurred speech.

So ... you've got something going on (hopefully benign fasciculation syndrom), but IT DOES NOT SOUND LIKE ALS. From what I have read, swallowing problems are very common with anxiety-based syndroms, like BFS.

I should have said that in my first post ... sorry to scare you.
 
Springboarding from what Beth said, many of the flavors myositis, MG, Parkinson's, as well as other neuromuscular problems can present with swallowing difficulty.

However reenforcing what Beth said, anxiety related illness is a significant culprit in what you are describing too.

Take care,

Robert
 
Guys,

Thanks for the responses. You're right, honesty is definitely the best key. You guys are so positive and helpful under the circumstances.

anyway,

I'm just going to wait for the Neuro appointment, it's only a month and a half away. And in the meantime I'm going to see my GP again - in 2 weeks. I'm just going to have him check my muscles, reflexes, etc. So we can compare, see if things have changed since the last time I saw that doc at the clinic about this stuff (which will be 2 months by that point). I'll definitely update then, if anyone's curious!

Thanks + Bless You.
 
Any chance you're pregnant? Sounds like morning sickness.

AL.
 
answer to bryan12:

yes, I ended up with no diagnosis. Maybe it is BFS, maybe it is another thing, only time will tell. But for now I'm still twitching every day in every muscle for two years and three months. The only thing that relief my symptoms is gabapentin.

advice to Kid-Ali:

again I would like to say don't waste your time with your fears. All of us will die someday. If we think for a moment we will see that our lives is small even if we live the normal life span, so we could die from ALS or not but we will die no matter if we have the disease or not. I think the best we can do is enjoy the days we have left. The end of our lives is in God's hands. Even with some disease like ALS we cannot predict the future. Maybe we will die from it, maybe some scientist will have a clue and find some kink of treatment, maybe we will got better because our body is very complex and sometimes the disease stops the people get better and even the doctors don't know why and most important God can do a miracle, our faith cannot be destroyed by the disease, only our body and finally our spirits will be free at the end of our lives no matter which caused our dead. So stay positive. I know how you feel, I'm on this for more than two years and only now I learned that I can't lose more days with my fears. I hope you understand this and please don't waste more time...

God stay with you.
 
For Kid-Ali,

Do you breathe through your mouth when you sleep? It sounds to me that the tickle you feel is from dryness - you cough then you gag. Some people have more relaxed oesophageal sphincters which allows undigested food and gastric juices to easily backup into your oesophagus which you then throw up.

I would suggest that you use a humidifier at night and kept a cough drop or a saucer of honey at your bedside to take when you wake up. At times my mild asthma will give me a tickle at the back of my throat which often leads to gagging and sometimes throwing up. To me this coughing and gagging doesn't sound neurological at all. If you have a strong gag reflex then gagging after you cough is common. Anxiety itself can cause gagging. It can give you the feeling that you have a lump in your throat that you can't swallow. It's medical term is globus.

Everything is exaggerated when you are anxious. You could try a relaxation CD and listen to it regularly until you see the neuro. You really need to set aside some time when you can consciously try to stop scanning for symptoms. Tell your GP how anxious you are and ask for help with it.
Hope things look brighter soon.

Northern Dancer
Whether you have a MND or not you are suffering and need help.
 
Status
Not open for further replies.
Back
Top