Possible Bulpar symptoms? New to forum

[jellis86]

About a year ago I was having difficulty clearing my throat and swallowing due to excessive post nasal drip. My Dr prescribed a daily antihistamine along with a nasal steroidal spray. After a couple of months the drainage nearly stopped and my throat clearing became rare. A month or two later, maybe December 2011, I began to notice a slur or lisp in my voice that was not present before. My tongue seemed thick and I sounded like I had a few drinks. In Feb of this year I went back to my Dr. and he referred me to ears nose and throat. ENT said my tongue looked a little thick and my vocal cords were somewhat irritated, beyond that he was useless. I decided to see if this might go away and by May my speech became slowed down and slurring to the point that I sounded like a stroke patient. My family and friends thought I was drinking or that I had had a stroke. I also started being extra emotional, like watching a movie that might make me somewhat teary eyed but I would lose it emotionally and have to leave the room. Laughing while talking is also a nuisance as I laugh so hard at times my speech is completely unlistenable. I went back to my Dr. and he had me get a head MRI, ultra sound of head arterial supply, and several blood tests including Lyme disease. All came back negative and now I have an appointment with neurology July 5th for further diagnosis.
My speech is slightly improved earlier in the day but by afternoon/evening, it truly sounds as though I have a had quite a few drinks. I have excessive saliva, bite my cheek when I sleep, I now wear a dental guard to bed, and I sometimes aspirate food/drink slightly. I have been doing some online research about these symptoms and it keeps coming up as a Bulpar type.
Does what is happening to me sound like that diagnosis might be correct. What types of tests should I insist the neurologist perform.
Thank you very much for any information!
Joel

 

[chrisroski]

Hi I'm fairly new to this forum myself. I strated out last year exactly the same way you did. Clearing throat, slurred speech, all of it. Ear nose & throat Dr found nothing. My primary sent me to neuro, had EMG done which came out fine and my MRI was fine. They told me I had Primary Lateral Sclerosis, which is still a form of ALS, but progession is slower. The past few months my eating got very difficult and last week I had a feeding tube put in, which has helped a great deal. However, on my discharge papers from hospital they had diagnosis of bulbar ALS. I am going to discuss this with my neuro in July. So understand how you feel, but I'm not sure about your diagnosis, hopefully the neuro will be able to tell you much more than I can. You find this forum very helpful. The people on here are wonderful and you can ask as many questions as you want. Sorry we have to welcome you to this forum, but it is nice to communicate with people who know what we are talking about, cause our families, helpful as they can be, cannot understand what we go thru. God Bless and keep in touch

 

[HelenL]

Hi folks, I can't comment on your bulbar symptoms or not, as I haven't aquired them yet.... however, I do know that most Bulbar have a high risk of choking, especially on thin liquids, so be careful while you're waiting for your actual d x. Using thickening agents will help prevent choking.

Also, even if you have the technical d x of PLS, you will get SSI benefits quicker with an ALS d x . My neuro considers PLS (UMN) to be one one end of the ALS spectrum, and PMA (LMN) to be at the other end of the spectrum. I'm have mostly LMN symptoms myself.

Good luck, search the forums, and above all, stay positive!

 

[momap53]

So sorry you're having a rough time. Choking certainly is scary.

While you're waiting, keep in mind what Helen said. Thicker liquids are usually easier to swallow than thin ones. You can get a thickening agent in powder form at your local drug store. Salads can be problematic as well. One tip that some with swallowing difficulties find helpful is to tuck your chin to your chest as you swallow. Meds may go down easier if you take them with a spoonful of yogurt or something the consistency of pudding instead of water. Have your family brush up on the Heimlich Maneuver and learn how you can do it to yourself in an emergency.

Good luck with your appointment. Let us know how it goes.

 

[ltbeauti]

Well I am classified as ALS and I would rather have this diagnosed, because the ALS chapter near me has been a God send. Really they have helped me so much in getting me equipment to use like a 3 wheel walker, a threshold ramp, a scooter, an iPad with great speech on it!
I had the same symptoms as Joe, except no excessive saliva and they lasted for years. I have thick saliva and I use papaya extract (GNC) or mott's natural fresh pressed apple juice to help thin out my saliva. I use the chin tuck method of swallowing and also using a straw helps put the chin in the right position for me.
I have a slower progressing form of ALS. I had only bulbar speech symptoms for years. Then some weakness in hands,especially left. Then 5 years from my first symptoms, I started having balance issues. I began to use a walker sometimes, then all the time. My legs are weaker and they are stiff, but still eating and drinking right now. I have been maintaing my weight through high calorie diet.
Joe you know where we are.... These people have helped me so much.

 

[jellis86]

Thanks for the feedback everyone...sorry to hear that people have these afflictions but it's great to have these forums and other support groups available!
I went to my neurologist July 5th and he did some standard tests, speech, reaction, strength. He thinks I might have Myasthenia gravis and he ordered blood tests, which I have read take a week or 2 for results.
He also had me take a barium swallow test which I had yesterday. The findings were, "everything seems to be working correctly", at least as far as my swallowing is concerned.
But my emotions and speech keep getting worse, especially towards the end of the day.
So now it's waiting on the blood tests. I have another appointment with the neurologist and speech therapy in August also.
The worst thing is waiting...we know how our bodies are supposed to be and when something isn't right, sometimes we are the only ones that know!

 

[tammyg]

WOW, this sounds like my dad's story. He was Miss dX ed for 2 years with the Meth Gravis thing, they said it was like a link missing between the brain telling the mouth what to say. We thought my dad has a stroke also, we would tease him about "Have you been drinking"?At the end of the day we could not understand one word. The later in the day the worse it was. I seen it all with my dad, I know there are 2 kinds if Bulbar Pasly. Bulbar Pasly & Psudbo(mispelled) Bulbar Palsy. Psudbo meant on sets of crying or laughing spells. I wish there was a blood test they could give for ALS but it is more like process of ruling out everything else. My dad had a spinal tap to rule out like 350 other things. Is there an ALS Hospital where you are. Dad had a feeding tube in Dec 08. It really helped keep the weigh on and helped him take his meds crushed up also. My dad almost waited tooo long to get his feeding tube installed and was almost not able to get it (getting the tube back out after surgery with their throat issues)The sooner the better. It also was easier for him to eat and it did not take hours with his coughing and chocking issues. If you ever need me I am here for you. Sorry you have to be here. Maybe the Dr's are right I hope but...

 

[jellis86]

Well, my blood test for Myasthenia gravis came back with negative findings. So for now the cause of my slurred speech remains a mystery. I have another Neuro appointment the first week of August to discuss other possibilities.
I was sure he was n the right track with that diagnosis since my speech definitely worsens as the day goes on.
I'll write more when I know more OR if I acquire more or worsening symptoms.
Thank you for all the responses!

 

[tiger1]

Hi. I am a newcumer to the forum just looking for some answers. Its very wierd I have close to the same symptoms. I started having random muscle twitches and spasms all over my body about a year and a half ago. I never thought anything of it other than maybe it was a side effect of going off lexapro too quick. But in September for about 2 weeks I had the craziest headaches all over. I had jaw pain and tooth pain that went from one side to the other. Than I started feeling off balance. Than it was stomach pains.Than weakness came.Than I could notice myself mispronunciating words. Like slurring on certain syllables. My wife is an e.r. nurse and thought I was crazy! I have been through 3 nuerologist all giving me different answers from its strees, mini stroke, and the last one saying my emg was normal so im ok. But recently the slurring came up again....it did go away for a little. Im so stressed because it seems like none can give me an answer and I still have all these symtoms and no real answers.

 

[jellis86]

Hi. I am a newcumer to the forum just looking for some answers. Its very wierd I have close to the same symptoms. Im so stressed because it seems like none can give me an answer and I still have all these symtoms and no real answers.

There is no doubt that stress plays a part with certain ailments, lack of sleep also exasperates symptoms. I do have slight sleep apnea also I wake at 3:30 AM for work and back to bed at 7-8 PM 5 random days a week (not 5 in a row nor do I have 2 days off in a row).
In the past year my Mom has had major surgery, my Dad has been placed in a nursing home under hospice care and that stuff wears on a person too.
So I know for sure that lack of sleep and stress related issues certainly do nothing to help my speech. But there is definitely another issue going on that is the root cause of it all.
With each negative finding it seems to move it down the road to more severe diagnosis. But who knows...only time will tell for sure.
I'm not sure if I mentioned this in an earlier post, but for the past 3 months or so I have been biting my left cheek and left side of my tongue at night while sleeping. Also, when I sneeze my mouth slams shut and I bit the same area of my tongue. I have been to my dentists and he did adjust my bite slightly to see if that helped, it didn't. I have a lower mouth guard that I can wear to bed but it sometimes makes sleeping more difficult and or I will wake gagging.

 

[jellis86]

Well...my speech is gradually becoming more distorted. It is much more pronounced early in the morning and then again towards the end of the day. In other words, in the middle of the day I sound only half drunk! My tongue is almost always tingling (about 90% of the time) and doesn't move as freely as it once did. I also have the issue of involuntarily clamping my teeth down onto my tongue after sneezing. Sometimes I will wake up during the night and either be chewing my tongue or cheek, although I can control this by sleeping with a mouth gaurd in place. Choking has become less of a problem as I have adjusted how I hold my head, the amount AND type of food I take in at one time, and just SLOW down while I eat. Certain foods, like corn, are difficult to eat as I seems to choke on them more easily. It is very difficult to rearrange food in my mouth, ie from one side to the other.
It is starting to affect my work, I am a service employee, TSA at the airport...don't judge me based on that...LOL... and deal with the public on a daily basis. People have me repeat myself and sometimes just sort of look at me strangly. I do have a letter from my neurologist stating about my speech issues but also stating that the cause remains unknown.
I realize that my speech issues are chicken feed compared to others on here with very pressing medical issues.
I hope eveyone has a great weekend!

 

[ltbeauti]

My symptoms were only speech related for a few years, then swallowing difficulties and some hand weakness. Now the legs and balance are affected. Still slow progression though.
My tongue moves very slow and I often have to push food to my back teeth with a utensil or it would take even longer to eat. Hope you find some useful info here
In the beginning I noticed that I could no longer blow up balloons or whistle and that water would get up my nose while swimming.

 

[jellis86]

Thanks for the input ltbeauti....
Interesting that you mention about whistling. Not being able to whistle, along with no longer being able to carry a tune when singing, were the first two things I noticed about my speech issues.
Eating is difficult and I too use a utensil to rearrange food in my mouth so I can fully chew/swallow it.

 

[jellis86]

I went to my GP 2 days ago for reasons other than my speech, a simple prescription update,...but he examined me and asked how everything is going. He then confirmed the results of all the tests so far and said that a lot of bad things have been eliminated...MS, MG, stroke, tumor, etc.
I told him my tongue always feels like I just put a 9 volt battery to the tip.....some of you will get that! He said it's definitely a nerve to muscle issue, but he has no ideas. He did make another appointment with ENT to check my vocal cords again and for chronic tonsillitis. He said that in no way does he feel that my tonsils are connected to my speech issue, but he wants ENT to look again anyway and check for irritation of the vocal folds..
So it's more waiting, 2 weeks, and then the Neuro a day after that. At least I can confirm that it i still just speech and nothing new.

 

[ltbeauti]

Joel,
It really sounds to me like pseudo bulbar symptoms. I hope the the Neurologist can rule out some things. Please keep us informed. We are here as you go through the realm of testing.
My tongue also felt too thick for my mouth early on, now it just moves so extremely slow. The neuro made me stick out my tongue and move it from side to side as fast as I could. It was very slow. Now (years later) it doesnt even go to the side anymore unless I move it there with my finger