Bulbar Symptoms

[Sid]

Hello everyone. Thank you for the excellent forum.

I am a 65 year old male. After extensive research on this site and many others, I am near 100% convinced that I have Bulbar Onset ALS.

These are my symtoms.

Approximately 15 months ago swallowing was becoming difficult. It is difficult to swallow solid foods, and small pieces of food would get stuck in my throat. I would need to stick my finger far down my throat to move it and hopefully cough it up. Sometimes I can, and it may stay there for the night, and I can sometimes get it out in the morning. I do not have a feeling of food caught in my throat - the food is actually caught. I have no problem swallowing liquids Or eating soft foods.

I have excessive saliva, and drool a lot, especially when fatigued from walking And during my walk.

I have trouble breathing when walking. I need to stop every few minutes to catch my breath. I have trouble talking when walking Due to my breathing.

For the past nine months or so I noticed a horse throat when fatigued. This would happen almost every afternoon after a walk. Two weeks ago I started having trouble saying certain words. I also have difficulty talking in a high pitch, not able to at all when fatigued. I do not have a slurred voice, and my tongue seems normal.

My left cheek has noticeable atrophy. Not my right cheek. I don’t know for how long, I recently noticed it. Comparing with photos from a year ago, it wasn’t there at that time.

Please let me know what you think.

Thanks in advance.

 

[Sid]

Regarding my swallowing, crumbly foods such as banana bread or toast will stay in the back of my mouth and I will not be able to swallow. I will need to push them to the front of my mouth with my finger and try again. But I usually will spit them out due to the difficulty.

 

[Nikki J]

Well clearly you need to be evaluated by your doctor. There are several things in your description that point away from ALS but in order to determine what is wrong you need to see your doctor and probably have several tests

 

[Sid]

Well clearly you need to be evaluated by your doctor. There are several things in your description that point away from ALS but in order to determine what is wrong you need to see your doctor and probably have several tests

Thanks Nikki. I have an appointent with a neurologist on Nov. 7.

 

[Nikki J]

Please let us know what they say

 

[Sid]

I saw the neurologist yesterday. Below is a summary of the visit.

I gave him a list of my symptoms with time frames. After he reviewed them, he asked me what I thought I had. I think he already knew what I was thinking, so I told him.

He proceeded to perform the strength tests for my arms and legs, balance test, Babinski test and checked my reflexes. Al were good, and there was no clinical weakness.

He checked my tongue strength against my cheeks - he said it was good.

He then informed me that he does not think that I have ALS. I asked about my swallowing issues, and he said that could be due to a stomach issue, and considering that it has been going on for 15 months, I would likely have limb weakness by now if it is ALS.

I did have a barium swallow test a month ago, and I was told that it did not show any swallowing problems, but there was a small amount of material that stayed at the bottom of my esophaghus. (I definitely have swallowing problems, but the Barium test was with consistencies for which I do not have an issue.) I had an esohpagus barium test afterward, but did not yet see the results. The neurologist saw them, but it was not discussed. Acid reflux was ruled out a year ago, and the symptoms do not match Gerd.

I am still very concerned about my swallowing; and hoarse throat, some talking issues with certain words and jaw stiffness after exertion. These have been getting worse over the past couple of weeks.

So I decided to push myself a little physically to see what happens to my face, jaw and throat symptoms. I have been limiting my walking to 3,000 steps a day. After the neurologist visit I walked 8,000 steps in the mid-afternoon. Afterward my throat was very hoarse, my cheeks felt numb, my jaw was much stiffer than normal, and my drooling accelerated. All of these things happen after walking anyway, but the more steps, the worse they get. And not to forget the atrophy on my right cheek.

The 8,000 steps really amplified these symptoms quite a bit. Six weeks ago I walked 10,000 and 12,000 steps without these issues.

They took blood for a Myasthenia Gravis test. Also, at my insistance, I have an EMG scheduled for December 3.

I would appreciate it if anyone can express their opinion on the jaw stiffness, hoarse throat, cheek numbness and talking issues; or the entire visit.

Thanks in advance.

 

[KarenNWendyn]

Hoarse throat suggests a reflux issue. Reflux generally shows up on a barium swallow, but I would suggest seeing an ENT or a gastroenterologist if you still have no answers following the EMG. Sometimes endoscopy is needed to physically visualize all the structures in order to diagnose the problem.

Cheek numbness points away from ALS.

The first sign of bulbar ALS tends to be slurred speech that others notice, so without that, ALS becomes less likely.

The EMG will be helpful, but I feel that a variety of conditions are still on the table at this point and there’s still a lot pointing away from ALS.

 

[Sid]

Thanks Karen for your reply. It’s just that these facial symptoms all started at the same time a few weeks ago, and have slowly gotten worse during these weeks, and also get worse as the day goes on just doing normal activities. After rest, they subside a little. Then add the cheek atrophy on one side, it’s hard to come up with something another than ALS For these symptoms as a group.

Thanks again - I do appreciate you responding.

 

[affected]

Truly, not even close to bulbar ALS. Doctor confirms as do we.
I hope you find answers soon, but they are not going to be found here.

 

[Sid]

Thanks. That is reassuring, especially coming from someone whom knows Bulbar symptoms as well as you do.

I appreciate the responses from all three of you women, you are providing a great service.

 

[Sid]

Hello again. The NCS and EMG were performed on 12-3-19. The report is attached.

The conclusion makes me feel little better, although I still have concerns because of the following.

I have trophy on my left cheek.

I have swallowing issues where small pieces of food stay in my throat when I swallow. Can't seem to clear them. Toast and other dry foods, as well as pills are also an issue.

My voice is normal in the morning when I first wake up. It gets worse as the day goes on. Talking, eating and exercise all contribute to this. By the end of the day it is difficult to talk. It is back to normal the next morning until after I talk for a little while. My voice symptoms are almost identical to a recent "Newly Diagnosed" thread where there was a clean EMG and later a diagnosis of probable PLS.

Please let me know if my concerns are warranted.

Thank you.

 

[Bestfriends14]

You have an EMG that clears you of ALS, you have no symptoms that relate to ALS (sorry, cheek atrophy has zero to do with ALS), and a normal clinical exam. What in this extensive list of you dont have ALS seems confusing?

You will need to continue working with your doctors because ALS is not your issue. That is great news. Please be grateful for this and also remember that your continued questions and posts are asking questions of folks who do actually have this disease, or of their caregivers. Their time is precious; please try to respect that.

 

[Sid]

Thanks Bestfreinds, I appreciate your Quick response. I wish you and the others on this forum the best.

 

[rmt]

I think you are talking about my post about my husband. If so, do you have slurred speech that others notice? My husband certainly does. It fluctuates and is sometimes pretty good and sometimes really bad. But people definitely notice something isn't right. For example, his family thought he might be drinking and asked me about it (he doesn't drink at all so they were really confused at the prospect). A neighbor emailed to ask if everything was OK after talking to him this weekend. If you do have slurred speech that others notice, then I understand your concern.

Though, after a year and a half of appointments, we have a "probably PLS" diagnosis and all we can do is wait to see what happens in the future. So really, maybe it is better to just enjoy life. I feel like we have rules out everything treatable, which strangely makes me feel better even though it sucks. All that is left is to make each day as great as it can be for as many days as we have.

 

[Sid]

Thanks RMT for chiming in on this. I was hoping that you would. I am sorry about your husband’s diagnosis and hope that it turns out to be something else. I’m sure that it is extremely difficult not knowing. Not a fun way to start retirement.

My voice is not slurred except for sometimes late in the day, but if I concentrate on my words when I begin talking, I can talk without a slurred voice. Nobody has noticed other than me. My wife said that she never noticed. So I will take that as a good sign.

You eased by mind about PLS, but something is going on and I will work with my doctors to try to figure it out.

Good luck to you and your husband.