Speech and swallowing difficulties

[Persephone]

Hello to all...I am new to the board. After being pitched to several doctors, my new ENT surgeon told me that I needed to be seen by a neurologist for my issues. I am having slurred speech, difficulty swallowing and chewing. I was told that I needed to be worked up for the possibility of MS, ALS and a brain tumor. No offense, but all these possibilities suck. When I started looking up each one, I realized that I had symptoms that matched each of these, which is probably why he wanted me to be worked up for each one.

I was wondering if anyone had speech as your first symptom. I have problems moving my tongue and starting having a fast downward spiral of swallowing problems. Water comes out my nose if I don't take time to gentle sips. I also have food issues...no ramen noodles, hotdogs, peanut butter, etc for me.

I was wondering if anyone of you had ear issues also. I have ear fullness, pain and ringing and crashing waves which vary in intensity each day. I also have headaches that increase with bending, going to the restroom and increased heart rate. At times I have vomiting with it also. By noon or 1pm, I start feeling noticeably better which is good because I pick up my child from school, shop, homework, etc.

I hope that I have not offended anyone by my questioning. I read thru some of the posts and noticed a trend in people asking if they have ALS without a physician visit. The reason I posted and joined was that I had a doctor tell me that it was a very real possibility. And, like many on the board, I'm scared. It is truly frightening to choke when eating or drinking. Having food stuck is painful and scary too. I sound like I'm drunk, can't move my tongue much and right side and back of tongue is numb. It is also very unnerving to know that thiings are going wrong quickly. I would really just like to know how to manage the issues I'm having. I would like some advice on getting thru the testing, too. I.figured this is the best place for that advice.

I do appreciate you all taking the time to read and help. Thank you

 

[sadiemae]

Has anyone else noticed your slurred speech? And do you choke on water, but can drink a milkshake with no problem? Also you age? One thing in your favor is feeling better as the day goes on. My PALS and most PALS get worse as the day goes on. After being up and running around for a few hours, he is ready to get back in bed.

 

[Persephone]

My family, my internal medicine dr, and my ENT dr have all noticed the slurring. It is definitely noticeable. It has not gotten better nor does it improve thru the day. My head improves thru the day. I am 40 yrs old. As far as my swallowing issue...I can choke on anything from water to veggies to meat to yogurt, etc. Water tends to go up nose or down wrong pipe. Food is getting stuck just past the back of tongue well above the thyroid region. I also have trigeminal neuralgia on the right side of my face which was diagnosed in July 2012. I also have a enlarged node on my right submandibular gland which is still within a watch and wait approach. I thought the node growing was causing all of this, but when I saw ENT, he said the issues with my tongue, the numbness, the declining movement of it, etc was not caused by the growth but MS, ALS, or a tumor pressing on my nerves near brain stem. Besides taking small bites and chewing thoroughly, what can I do to help with swallowing and tongue issues? I can't sweep my tongue or move it to get food from right side. Just was hoping for some advice on issues like that.

Hope that cleared up a few things. Thanks for the reply.
Persephone

 

[skipper66]

Hope you find out what is going on with you soon Persephone. Wish I could be of some help. I will add you to the list of people I pray for on this forum. Kim

 

[CGARS]

Persephone,
Do you have the appointment with the Neuro yet?

Your syptoms sound scary, and I'm sure stress isn't helping.

I have learned if you keep your mind occupied with positive thoughts it helps things.

If it does turn out bad, know there are many people living pretty happy lives (all things considered)
If it turns out not so bad, then, good!

I wish you luck with your appointments, you have friends here you haven't met, but we're thinking about you.

Cheers,
Casey

 

[kiwisally]

I am sure you are scared, the food/drink issues truly are.

It helps me to eat slowly without distractions. Don't attempt multitasking, just concentrate on the task at hand. Take small sips (like you are). If/when you have trouble, do your best to remain calm. You will get it sorted. If the food is all cut into small swallow-able bites on your plate it might give you some reassurance that you will be able to get any of it down if you encounter a clog along the way. That might help you to relax a wee bit and that helps the whole process. A small very shallow spoon works best for me.

I have none of your ear issues or any in that paragraph. I do have most of the ones in your swallowing paragraph(s).

Best of luck to you, I hope you find out what your problem is soon.

 

[pscheffel]

My Mom started slurring her words in the beginning. Then she could not whistle like she used to and pushing her tongue into her cheek inside her mouth was harder. As she progressed the slurring became very noticeable. She went through many tests, to rule out stroke and other things. It was ultimately the EMG that showed signs of the ALS, even though we thought her strength was still perfect. Her slurred speech started around May 2011, ALS diagnosis was in Dec 2011. At this time she can no longer swallow and is totally dependent on the feeding tube she had inserted in Feb 2012. It's horrible. I hope you do not have it. Good luck.

 

[Grateful]

HI, Persephone

The fact that you improve during the day is a very helpful pointer away from ALS, so hang on to that when things are really scary. It's really hard, I know, to hang on to those when things are getting really scary but any port in a storm is not to be sniffed at.

I love your chosen name; Persephone is a beautiful legend which tells us that there is spring and summer, just as there are autumn and winter, and that there is always spring again.

Good luck; there are some amazing people here who will help you whatever the outcome. But I would avoid pomegranates if I were you!

 

[momap53]

Persephone, I'm so sorry that you find yourself here looking for answers. When is your Neurology appointment? Sounds like you're being steered in the right direction.

The testing involved in obtaining an ALS diagnosis can be a very protracted process as any other diseases that could be causing symptoms must be ruled out. As notme's tag line reads "it can't be ALS until it can't be anything else." There's often a lot of waiting to be done for test results to come back so that the doc will know what direction to go in next. Waiting is so difficult for all of us when we feel like our lives are on hold till we can receive a diagnosis.

Several of your symptoms don't appear to fit in with the typical ALS Clinical picture. Sensory issues are not common, nor are headaches (morning headaches related to a CO2 buildup overnight once breathing muscles are impaired may be a problem) or vomiting or ringing in the ears. Trigeminal Neuralgia is sometimes seen in MS.

We have several Bulbarians here on the forum.

With swallowing issues we usually hear about an initial problem with clear liquids which can be aided by adding a thickening agent to the fluid. Foods with a pudding type consistency usually go down easier. As ALS progresses the foods may need to be puréed. A Speech Language Therapist is really the best resource for swallowing techniques to suit your individual needs depending on what the cause is.

Some basic tips: (and you're probably already doing some of these.)
Never eat alone if you have issues with choking
Try to eat smaller, more frequent meals.
Remove any distractions at mealtimes. No TV, cell phones, games, work, etc. a quiet environment goes a long way when you have to concentrate on swallowing.
Try to be well rested prior to meal time.
Sit fully upright
Don't mix consistencies in a single bite. (And of course take very small bites)
Avoid dry, crumbly, or large chunky foods.
Tuck your chin to your chest as you swallow.
Try to swallow several times for each bite.

My Dietician suggested that carbonated beverages or ones with lemon flavoring may go down easier at first.

Hope that some of these help.

 

[notme]

Hi

The issue with the improving during the day leads me to consider the very real issue that the problem may be something to do with apnea ...did you mention it to your

For years, I was having morning headaches and generally woke feeliinh like crap. I'd feel better as the day wore on. That's just one thing to consider. There are several things that can cause the ear issues and the heart rate issues when you're going to the restroom. I've actually passed out from the rapid heart rate it's caused before we found my problem. It was easily treated with medication, but if it's present, it does need treated. A cardiologist would be the best choice for any issues that affect heart rate for anyone, male or female, especially in your age group. I would imagine they would order a Holter Monitor to wear for a day...sometimes longer if something isn't spotted on EKG.

remember, I am not a doctor. My only experience with lung issues are from personal experience and 20years as an EMT. IT could be nothing. Even blood pressure issues can cause problems, and we aren't always aware of it.

As for the choking and slurring, all I can say is hang in there while they do their testing. We have a saying around here: it can only be ALS when it can't be anything else.

How long til your neuro appt? Think positive. There are other things that can be causing the issues with speech, eating and drinking. You may find it also helps a bit to lean forward when you're swallowing.

Keep us posted with updates. I wish the doctor hadn't mentioned ALS to you at this juncture. There are lots of possibilities. They will likely do EMG, blood work, and MRI as beginning tests, since you've seen the ENT already.

 

[notme]

My reply went off to moderation. Please read it when it shows up.

Grateful, I'm sorry, but the fact that her headaches get better don't point away from ALS at all. They are quite common in sleep apnea and in those with any respiratory issue, and many with cardiac issues as well. Lots of reasons.

Certainly this lovely lady may have any number of problems as nothing has been ruled out, I don't want to give a possibly false bit of info, either.

I'm pointing this out for future readers that might see this thread, as AM headaches are classic early respiratory symptoms. (and can be something totally non-related, too, of course)

 

[notme]

My family, my internal medicine dr, and my ENT dr have all noticed the slurring. It is definitely noticeable. It has not gotten better nor does it improve thru the day. My head improves thru the day. I am 40 yrs old. As far as my swallowing issue...I can choke on anything from water to veggies to meat to yogurt, etc. Water tends to go up nose or down wrong pipe. Food is getting stuck just past the back of tongue well above the thyroid region. I also have trigeminal neuralgia on the right side of my face which was diagnosed in July 2012. I also have a enlarged node on my right submandibular gland which is still within a watch and wait approach. I thought the node growing was causing all of this, but when I saw ENT, he said the issues with my tongue, the numbness, the declining movement of it, etc was not caused by the growth but MS, ALS, or a tumor pressing on my nerves near brain stem. Besides taking small bites and chewing thoroughly, what can I do to help with swallowing and tongue issues? I can't sweep my tongue or move it to get food from right side. Just was hoping for some advice on issues like that.

Hope that cleared up a few things. Thanks for the reply.
Persephone

Lean forward when you swallow.
Very small bites
Try a liquid thickener if water is a huge issue, as you don't want to aspirate.

The headache and other things I answered with some things you may want to look into with your doctor.

Morning headaches are very common in apnea and in some heart conditions. Hopefully the post shows up later. People without ALS can and do have those non-ALS symptoms you're having. Are they recent? (the morning headaches and heart rate?)

 

[kiwisally]

All good helpful ideas. For me.... carbonated beverages are not at all helpful when it got to the point that stuff goes up my nose easily. They were early on. Lemon is a no no as well, it just make the few muscles I have left pucker.

 

[Forester]

Has anyone else noticed your slurred speech? And do you choke on water, but can drink a milkshake with no problem? Also you age? One thing in your favor is feeling better as the day goes on. My PALS and most PALS get worse as the day goes on. After being up and running around for a few hours, he is ready to get back in bed.

Could you please comment more on the significance of this?

 

[momap53]

I think the carbonated beverages and lemon flavoring bits came from a small study in Japan.
Kiwi, thanks, I'll let my dietitian know that you didn't find them helpful. I'm not there yet so can't comment from personal experience.