Questions (again) about swallowing and more

[Antologia]

I have a few questions.

When people with ALS get swallowing problems, is that only choking or also the feeling some food is going down slow? And is it the same all the time since it starts, or is it sometimes worse then other times?

I ask this, because I have had some choking lately (since the begin of june). Once in tea, very bad, then on my own saliva when I was walking and talking at the same time, and now and then I choke on food. I also feel like some food doesn't go down quickly like it used to. This happens with dry food, like bread, potatoes and that kind of stuff. It feels as if I didn't chew on it, which I did and sometimes I need water to get it down.

Some other strange thing I had last week was something with my toe. I was sitting on the couch, relaxing, with my husband. Suddenly I felt some pain in my right toe, it felt like cramp. So I looked at my toe and I saw it was moving, bending down. This happend three times in a row, my husband saw this too. Is this something that fits ALS? Anyone familiar with something like this?

My history:

-may 2013 random fasciculations widespread & pins and neeldes
-oct 2013 excessive saliva
-nov 2013 went to the neuro no clinical weakness
-jan 2014 EMG and had EMG: clean Neuro said it was most likely BFS, but wanted to see me in another 6 months (which will be in july) CK level in blood was also normal.
-may 2014 one year of fasciculations and pins & needles, 24 hours a day, every minute, widespread
-june 2014 light swallowing problems and every now and then choking

Some other thing I saw: when I close my lips I see that on the right side, my lip isn't closing at one small point. My upper lip just pops up in one spot and you see my teeth. If I put my lip down, it will close, but as soon as I relax it pops up again. Strange?

Does anyone recognize this?

I also have some other strange thing. This might not be related at all, but I do want to mention it, because maybe there is someone over here that regognize this and can tell me: did you think about this disease which can mimic ALS?

I have episodes of diarrhea and sulphur burbs. They always start in the evening and stop in the morning. I have that even longer then the fasciculations, this started 5 years ago and I have it once in a month or so, sometimes it's gone for 6 months and sometimes it happens twice a week.

There is definitely something going on in my body, but what?

My next neuro-appointment is in the beginning of july. What should I tell or ask him to do? What tests are relevant at this point? Should I ask for a new EMG and then the bulbar region?

Any thoughts?

 

[GilWest]

My mom's first symptom was slurred speech. Which progressed to choking...literally choking, then muscle fasciculations, atrophy and loss of function. Has been a little over a year since it started. Go to your appointment and try not to worry.

 

[MaxEidswick]

>Go to your appointment and try not to worry.

ditto that!

>My next neuro-appointment is in the beginning of july. What should I tell or ask him to do? What tests are relevant at this point? Should I ask for a new EMG and then the bulbar region?

you shouldn't need to ask. Check to be sure you neuro is ald/mnd trained, if not find one that is by contacting your local als/mnd organizations or uni ...

 

[Kosmoskatten]

You have posted several times before, so I might already have suggested this.

Have you been evaluated for food allergys, esopheagal issues ( inflammation in stomach lining, hernias, silent reflux )? Issues concerning the stomach could cause excessive saliva, swallowing problems and also cause your diarrhea and sulphur burbs. Food allergys could cause cramps and twitches.

 

[Antologia]

Thanks for the reply's. Unfortunately my neuro appointment has been changed by the hospital, because my neuro will be on a holiday. So now I have to wait a few weeks longer.

@kosmokatten: you did not say this before. My neuro never talked about something else that could mimic ALS. He just did an EMG and bloodtest to find out CK level. He talked about myasthenia graves and some other muscle diseases, which didn't came up at the EMG. He did never talked about food allergy, esophageal issues or something. I did went to the hospital with the stomach problems and they looked in my stomach and found that I had indeed a bit reflux. But not too bad. I also have pain in my neck and headaches, could be hernia but... I can't figure out how this could be related to the fasciculations in my face and eyes and also have no clue how this could effect the saliva, which is the most concerning for me at this point. Because this is the only thing that is really bothering me 24 hours a day. It never stops since it started and it's really irritating. The twitches are too, but they don't hurt and they don't make me spit when I talk or swallow every few seconds....

Keep you all posted when there is something new of if I have been to the neuro at the end of july. I try not to visit this site to often, because I don't want ALS be too much in my life for now...

I am thankful for all of your time and patience listening to me and giving me advice. I know some of you can't type that easily anymore.

Have a good weekend.

 

[GilWest]

You can look at it this way. It will all work out one way or another. If you have ALS, you have it. There was no specific cause or anything you did that we know of at this time. There is nothing to do but take each day as it comes...the same with any MND. Worry with ALS will do nothing. Taking action is what needs to be done. BUT you are not even sure what it is yet. BELIEVE ME, ALS will make itself known. I think you are putting the cart before the horse.