ENT for lump in throat/swallowing difficulties?

[seanm]

Hi ,

I am a new member and am wondering how an ENT could be helpful if I visited for difficulty swallowing/lump in throat issues that just began. Thank you!

 

[Al]

He'd probably do swallow tests to see whether it is tongue, throat, muscle or all in your head because off something you read on the internet. Before you get all defensive, if you look around in here there's a hundred or more examples of throat issues ending up being nothing. You could have a virus causing swelling. Don't jump the gun yet.

AL.

 

[seanm]

Yes, that could be true. Thanks, Al. So if it's throat, does that mean it's not as ALS related? How is that testing diagnostic? Thanks for all your help. How are you?

 

[BarryG]

I would say that in almost ALL cases bulbar ALS starts with slurred speech and progresses to swallowing problems. I have not read or heard of anyone who was eventually diagnosed with bulbar ALS reporting otherwise. I have had symptoms for two years now and have NEVER had any "lump in my throat" feeling. BTW, I was diagnosed in January 2008.

 

[seanm]

Thank you Barry. How do you cope with your symptoms? How noticeable is the slurring?

 

[BarryG]

It started out as slight slurring (noticed by my wife before me), and has since progressed through hoarse, nasal heavy slurring to now where it's a barely intelligible mumble. If I met you on the street you would probably not be able to understand a single word out of my mouth. And my speech problem it isn't mainly a throat problem, it's the fact that my tongue and lips don't work. I use a number of electronic speech devices and sometimes write things out even for my own family, and they GET me. Swallowing is a combination of throat, mouth, tongue and lips malfunction and I now get most of my nutrition and hydration through my PEG feeding tube so coping is what I'm doing.

 

[seanm]

Hi Barry,

Wow, you have been through so much. I'm glad that your family gets you! How have your providers been?

 

[BarryG]

Sean, everyone from my local family doctor, the numerous neurologists, respiratory technicians, dietitians, speech language pathologists, and nurses have been wonderful. They all doe everything that they can to make things easier for me. When I had my PEG installed I was in the trauma unit at the hospital (that's where they had a bed free) and none of the nurses there knew anything about ALS so I was an education for them and they treated me great. And I can't forget my moral support providers here on the forum who make it possible for me to get out of bed in the morning. And my family of course! :-D

 

[serenade]

Sean I was seeing 4 ENT doctors for 9 months before the final diagnosis in March 2009 of bulbar/als. They all had different opinions of what was wrong with me. Alot of time and money for them to not have a clue. However I did learn from my appointments and reading my medical records that anything that causes acid reflux made me slur worse, have the feeling of alump in my throat and a thick tongue. I avoid anything with caffeine or any meds with antihistamine this increases fasciculations in my tongue. I stopped all the acid producing foods that I love. I gave up all my pepsi and I take a chinese herb now as well. My speech has improved I no longer have that lump in the throat feeling, I can eat whatever I want normally but have trouble drinking liguids that are thin from a cup (I use a straw) and swallowing pills has for the most part has improved. I drink allot of thick chocolate milk it makes everything go down smoother.

 

[seanm]

Hi Serenade,

I'm glad that things have improved! How did the dr. arrive at the diagnosis?

 

[serenade]

Haha that is a good one on how I was diagnosed! It all began in 7/08 I could not speak or breath properly after doing some dry wall work, ended up it the er had inhalers all kinds of med. Sent to allergist, ent x4 then to the neuro. My first Neuro sent me for blood work, swallowing tests, tyroid biopsy an MRI with and without contrast 2x. After 3 trips to his office and negative results on my tests with the exception of white spots on my brain. He said I was a medical mysery and sent me for a second opinion thinking I had MS. The next neuro said it was not MS because the spots on my brain were not that of a person with MS and thought I had myastemia gravis and gave me a 2 week med trial and then sent me to a 3rd neuro. The med trial made me worse and was thankful when it was over I can still feel the effects from it. The 3rd neuro looked at all my tests which were all negative to that point but my symptoms were of bulbar palsy so he sent me for an emg which showed a correct diagnosis of the bulbar/als it took 10 months to get to this point. So being one to not accept the final diagnosis my husband called neuro #1 we had the emg results sent to him to read. He said neuro #3 diagnosis is correct but just to be sure he is sending me to a highly known asl specialist or to the Cleveland clinic for a second opinion. I also am getting a lymes test just to make sure. If anything all my doctors that I have seen to date 13 total all have different opinions of what was initially wrong with me. I now know I have allergies at the age of 56, a deviated septum, and now als. Can't even tell how much money went to all these co-pays and medications just to finally hear I have als. So on the bright side I know what I am dealing with and do not have faith in the medical profession at this point except for neuro #1 he speaks to us personally we don't have to make an appointment to ask a question I am thankful for the ALS forum because I now can get answers before saying yes to any doctors recommendations. I currently take no prescribed meds only chinese and herbal and do stretching in the hot tub. I feel better and have decreased my symptoms in regard to muscel tightness/cramping/spasisity and my swallowing and speech have improved too since starting this a month ago. Well thats the whole story thanks for asking.

Judy

 

[seanm]

Hi Judy,

Wow, you have been through so much! Glad to hear that things are a bit better. So, I guess it's good for me to ask for the throat EMG?

 

[serenade]

No what the ENT will do is run a scope down your nose and ck the back of your throat, voice box, vocal chord for any issues there. Helps to rule out other problems. A EMG is a test of your muscles and nerves a neurologist will order that if you get to that point. Acid reflux was part of my problem with the lump in my throat try watching what you eat.

Good luck

 

[julez]

Seanm,

My mom had a similar symptom as you initially. In June 08 her speech started giving way. It sounded like phlegm....like having an eternal cold. She seemed to feel like she had a lump in her throat. Eventually, she lost her voice and no one could understand her. After 2 ENT's and a gastrointestinal specialist, she underwent a nissen surgery to correct her acid reflux. 5 months after the surgery, she still could not talk. And, she started spitting into paper towels. We went to an ENT and he finally suggested it was a neuro problem. After 2 neurologists and an EMG and multiple blood tests, she was diagnosed with bulbar onset ALS. She will be going to the ALS center in a month in order to undergo an additional 2.5 days of testing. Seems like the neorologists are pretty certain it's ALS and not anything else. We requested her to go on the MG drugs...the doctor gave her 2 days trial and said if it is MG she will notice an almost immediate improvement on her speech and swallowing..but she has not....

Kim

 

[seanm]

Hi Kim,

I hope she does experience improvement soon! I went to the ER today and the dr. thinks it's acid reflux, so I will try the medication he suggested and go from there...health is so complicated!