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Flashster

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Dear All,

Firstly thank you for taking the time to read this post.

It all started in April this year. I had a raging sore throat which wouldn't subside. One day the whole left side of my body went completely flacid. This all went away and left me with with phlegm stuck in the left side of my throat - I couldn't swallow it away and when I did swallow, things felt 'uneven' in the muscles in some way.

Things progressed and soon I felt unable to swallow solids. The problem spread to both sides of the throat, near/below adams apple area. Its as if the peristalsis action in my throat wasn't strong enough to push the food down. I had to really gulp to get it down and even then there was some left over and took several swallows. I then noticed excess mucus in the throat after trying to swallowing even mushed up solids and ended up coughing all night. That was the end of solids.

My throat clicks terribly when swallowing also.

My doctor dismissed this as M.E. (CFIDS) a condition I have, but was under control and had very low symptoms. I went to a Neurologist at this point, who had experience of motor neurone disease, and he said he saw no signs of bulbar ALS, but did say he noticed some brisk reactions. I then saw and ENT person and they put a camera up my nose and looked down the throat, saw nothing obvious, and they then did a video fluoroscopy. I refused to take solids during the procedure, which I do regret, because they said that even though I only swallowed small amounts of fluid and pureed barium, the swallowing action looked ok.

As things progressed, I noticed more and more twitching in muscles and weakness in my arms and legs. I returned to the same neurologist, who upon examination again repeated he saw no signs of a new neurological disease, but suggested an MRI and EMG would be appropriate at some point. He said the twitching for motor neurone disease would be in the same muscles and would not be in random muscles as was the case with me.

I can feel increasingly perculiar muscular 'pulling' (hard to describe) when I try to swallow, and it takes great effort. It feels like things are getting gradually worse. I have been living on fluids (liquidised soup) since June. The back of my tongue and throat now get very achy and fatigued when I talk, or suck on a tablet or anything that basically involves tongue movement.

My palate seems to raise normally, though I have noticed the left side is lower at rest, and I've pointed this out to the ENT doctor.

I'm so sorry to bother people about this. You have enough to deal with. I also apologise in advance if anything I've posted is in any way annoying to any of you. I am trying to find out for myself whats wrong (via doctors), but would appreciate any advice or comments from the experts if you have the time and energy.

I am very anxious, and my family very worried. I've lost a couple of stone in weight.

Any advice very much appreciated.
 
One question comes to mind.......who takes the time to have a barium swallow and refuses to eat the very thing they have difficulty swallowing, sorry but that is ridiculous and you no doubt lost a bit of credibility with your doctors.
 
Dear Flashter,
First, I would always do every element of the test they are giving you..esp. if that is your main problem. Is there a specific reason you decided not to do this test in entirety? Personally, I feel that every test is important and you are in a pretty safe place if you start to have problems. Ie. if you choke, then medical people are right there to help the situation.

Second, I would think that if you were only on liquids since June you would have lost a LOT of weight...and that the dr. would be at least concerned with the weight lostt. Even 10 pounds in a couple months of time is significant to dr.'s and they will check it out further.

It does sound like something is up; but does not sound like ALS to me. It sounds like the overnight thing might have been a slight TIA that kind of messed up the connetions in your body.(esp. b/c of the one side numbness) MRI would be a good next step to take I think and asking about the weight loss if it is Significant.

Good luck.
 
The best thing for you to do is to listen to your doctors and do what they say, which includes taking the full swallowing test. Your symptoms are exactly opposite what they would be if you had bulbar ALS and, as your neurologist has pointed out, your muscular twitches would be focused in a limited area of your body and not occurring randomly all over your body if you really did have ALS.

If you continue to try to shoehorn your unrelated symptoms into the ALS "box", you'll do nothing but drive yourself and your family crazy. Unfortunately, that is probably exactly what you will do, so be warned in advance -- you will not get the answers to your problems here because, despite what you think you know about MND, your neuro was right -- you don't have it -- and you are are sadly wrong.

Good luck to you.
 
Thank you so much for taking the time to reply.

I totally regret not doing the barium study properly. I admit to feeling rather delicate lately, and the person before me came out of the room choking, which didn't help.

I presumed the problems would be very clear based on the fluids, but was wrong. I think I did lose credibility and I am fighting the 'anxiety' badge some are trying to pin on me. Alyoop you are totally right, I'm ashamed and I wish I could do it again properly.

The concern for me is that it started in the throat, got worse and now includes the tongue (fatigue/ache). Swilling my mouth out with water, and talking, even aches my tongue.

I suppose something else in the bulbar region must be causing this. The neurologist said he'd only MRI the base of the head region so I guess he's looking there too.

Thank you for being patient with me. I realise these sorts of questions must be quite annoying after a while!
 
I am a former Speech Therapist who specialized in Dysphagia. The Barium is important to diagnose issues but is accurate for "that moment in time". It can vary due to fatigue, time of day, etc. An accurate one which you will have to take solids in varying consistencies is crucial to an accurate diagnosis.
If you are living on fluids you may want to find a new ENT. It sounds like you are risk for choking. I wouldn't play around with it. If part of your soft palate is flaccid there is an issue.
 
I don't see anyway around submitting to a full swallow study. I understand about not wanting to choke, but having a complete study is the only way to get a true picture (even if it is just a 'snapshot').

There are many other much more common reasons to have problems swallowing than motor neuron disease. Get some answers so that you can perhaps have effective treatment. For example, neural stem therapy is not recommended for someone with MND, but can be very helpful in other conditions.

Good luck to you, I hope you're able to see the wisdom offered here, and by your doctors.
 
If it makes you feel any better, with MND, it's liquids that first cause problems, not solids. Any anyone with sudden onset of one sided weakness should be tested for TIA which is a mini stroke. They are a precursor to a full blown stroke
 
Thank you everyone.

I have been referred to another neurologist and am awaiting an appointment date. I wonder if its best to see what he says (providing I can see him fairly quickly)?

I would now need to pay for the ENT/Fluoroscopy myself, which I will do if its crucial. I know the sheer fatigue of moving solids around my mouth will cause me issues, never mind the actual swallowing.

They did say that the muscles were "doing the right things" and the ENT said that any swallowing issues would have been noticeable with the consistency I'd tried. But I am left with obvious swallowing fatigue, and they are telling me to try eating normally.

The palate thing is something I noticed after the swallowing issues started, but they dismissed saying it looked symmetrical. I felt it is lower on the one side (the same side the swallowing issues started) at rest. It seems to raise symmetrically and it seems thats what they care about. Ofcourse I can't remember if it was like that before becuase I never looked that closely.

The TIA seems interesting as I'm trying desperately to remember if that happened during/before/after the swallowing issues started. Would it go away within 24 hours I wonder, as mine did? And could it cause progressive symptoms thereafter. It was certainly very strange and sudden - I fell to the floor.

Thanks for all your help
 
I have been referred to another neurologist and am awaiting an appointment date. I wonder if its best to see what he says (providing I can see him fairly quickly)?

Yes, you should wait and see what your new neurologist says, even if you have to wait a while to get that answer. Quite frankly, your adventures in G o o g l e-fueled self-diagnosis have been little short of a disaster.

And you really should try to do what your doctors tell you to do concerning your swallowing. Just have someone at hand to help you if you do choke.
 
esophagus problems come to mind for me. Just an idea..
 
I honestly don't think a person can tell if their soft palate is too low. Its like examining your tongue, a futile exercise that only serves to fuel further anxiety. When my doctor told me mine was too low, (and had another ENT come into the exam room and verify what she was seeing) I sure couldn't tell, and on the way home I kept asking Don to open up so I could look in his mouth. We both sure looked the same to me, and his soft palate is just fine and dandy.

But, even if it is possible to know how a normal soft palate looks, if the ENT examined yours and says its okay, then it really is okay. That person has the training to know what it should look like. AND if, despite it looking okay, if it was not functioning correctly what would be happening is food going up into your sinus cavity, if that was the case, then even the thinner liquids that you did allow to be tested with for the swallow study, would have gone up into the sinus cavity area, and it would have been noted during the test.

People with gastro problems (esophageal) will oftentimes have difficulties with solids moving down, but that is once the solid food is swallowed, and out of the pharynx into the larynx and below.

Be patient, let your doctors conduct their tests and exams, and be willing to listen to what they have to say.
 
My husband is bulbar onset and swallowing liquids became a problem a fair while before solids became a problem.

Where abouts in the UK are you?
 
Hi All,

Thanks all. I really appreciate your advice and taking the time to write your replies.

It's the progressing symptoms (mainly in the throat/mouth) area together with a 'suggestion' from someone that led me to the bulbar als question. I admit g-o-o-g-l-e-i-n-g after that, which I now try not to do now as it makes one more anxious.

The soft palate thing was just one thing I noticed along the way, thinking it may be significant as its the same side the swallowing issues began. They (ENT + Neuro) seem to think its normal - so it is.

As mentioned, the tongue fatigue/ache has got worse and I now find it hard to talk - like I've been out in the cold and my chin/lip/tongue is still frozen. The speech therapist checked the range of tongue/lip movements and they were ok, but it took a heck of a lot of effort than it did when I did them a few weeks ago.

The swallowing issue Rose is around the pharynx area. The muscles in the neck, throat, jaw and cheeks feel 'wrong' and swallowing (fluid) is a lot of effort. Previously solids stuck at that point near the adams apple. The fluoroscopy show no blockage there and they said the muscles and speed of bolus seem to be normal.

The ENT people do want to do a endoscopy (? - the camera down the throat) next year to check for reflux, but they seem to think it isn't that now.

rachelg - I'm in the midlands.

Thank you all again.
 
You sound a LOT like me. My swallowing issues started suddenly, as well, with the sore throat, thick phlegm, and clicking. Over a couple of weeks, I developed the other sensations. Of a strange tightness or constriction. Just like I have to "swallow harder" to get things down. It is the worst when I have nothing in my mouth. Liquid goes down fine, and food does relatively so, but I went through I period where I ate almost nothing but bananas and Ensure, as I was having little pieces getting caught around the same area. It has never made me choke, just seems that sometimes, some things get stuck.

I, too, googled, acquired a significant amount of bulbar fear, too. But, with some persistence by a friend to try eating again, I slowly began to eat more and more solids again. It definitely seems that dry things are the worst, but I am back to being able to eat just about everything. Over the past couple of weeks, I have had problems with certain things getting stuck again.

I have had two barium swallows. One when the problem first started. It was just the liquids and it was normal. The second was right around a month ago, and it was the modified version. They noticed no abnormality on that one, either. I swore they would!

Last week, I saw an ENT. He and his brother were mentored by the best ENT in the world and did residencies at Mayo, so I felt pretty confident with them. They, too, stuck the little camera down my throat. Soft palate looked good. Made me make lots of noises and letter sounds to see how things were moving. Checked my vocal cords.

The only things he noted were that the back of my tongue and throat are dry. Still not sure why, and I have an area of inflammation at the base of my throat right below my vocal cords.

I have bad reflux, and at the moment, says that it is a combination of LPR, globus pharyngeus, and anxiety. Does your mouth feel dry? Once he observed that, it made some sense as to why certain things have difficulty going down. And, have you read about globus? It causes a feeling a constriction or lump in the throat right around the Adam's apple, which I noticed you mention.

I'm hitting 8 months with my throat symptoms, so I understand how miserable and frustrating this feeling is. I see a neuromuscular specialist a week from today and have several questions for him about it. I, too, have widespread twitches. Had a clean EMG about 2 1/2 months into them. Sounds like we're in similar boats, so I'll let you know if I get any further information from the specialist next week. :)

I wish you had swallowed the solids during your test. Like they have said, you are at a hospital, so you would have been safe, and they could have seen where, if anything, got stuck. Good luck in this crazy journey! Keep us updated if you get any further news, and I will let you know if I gain further insight from my appointment next week. Sorry so long! I just want you to know that I understand. My heart goes out to you!
 
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