We are all frustrated I'm sure, so you are not alone! Even the docs are frustrated! Like me, you are SO VERY tired of being poked and prodded, given meds that make you sick and don't relieve symptoms of MG. Don' apologize for your feelings. If you didn't feel that way I would wonder why. As far as coughing and being at risk for aspiration, that is a concern. I suffer from that issue although not every time I eat and I do not cough when I am not eating. I have been on medication for GERD and when I was having increased problems they added a second med 2x daily. I rarely have a problem. I also do what is called a chin tuck whenever I swallow food or drink (recommended by a speech therapist). That is a MUST for me. I would try the GERD meds and if you don't see a change you can always stop them??? Oh....AND I have to wear a pad because I have stress incontinence!!! Otherwise known as peeing in your pants!!! If we don't laugh....what is the option! Nothing is sacred when all you are trying to obtain is a sense of wellness!!!

Hang in there and NO APOLOGIES!
Barb

Tara,
Look in the Links Group at the esophageal studies. 100% of the patients studied who had MG had abnormal (slowed) motility. Not all had symptoms!

In addition to the tuck, do not talk while eating, keep your eyes front and forward and don't turn your head when swallowing. Take all pills with plenty of liquid and allow them time (food as well) to get completely down before lying down or putting drink or food on top of them. (Pills one at a time--I know it is boring when we have to take so many! At least 8 seconds to get food and drink down, I think the study said). b.

Tara,

The motility study is important. I had one done before my myotomy and will need a 2nd one as I am having more trouble with swallowing and the first one did show slowed overall motility.
My last modified barium swallow showed impaired pharyngoesophageal phase but I am supposed to have another one soon.

The motility study is important to have with a swallowing problem since different parts of the esophagus can show slowness and it can mean a different type of problem depending on the pattern of motility abnormality. It is a good tool.

I also recently had another procedure done in my ENT's office called a transnasal videolaryngoscopy and it showed evidence of false vocal fold muscle tension and a persistent glottic gap.

I have difficulty swallowing plus hoarsness and raspy voice that is worse with use. Sorting out the why and what to do with it often takes several tests and a good GI doctor to put them all together.

I look at the tests as necessary to get the answers needed to help me with maintaining voice and improving swallowing. All the techniques that B gave are golden and I must remember to use them more consistently. The slowness of eating and the chin tuck help a lot as has changing the types of foods I eat.

I was a salad nut but those are out since like others here have described lettuce so succintly as "wallmaper" for the throat. I am gradually finding foods that are good for me that I can manage easier then others.

I would urge you to get the testing needed to help your doctor determine what therapy can best help you. I right now am facing another surgical procedure in two weeks and wondering where I will fit in two more tests that need done when I have six more appointments that are 200miles of driving in the next three weeks.
Somehow I always find a way....but I too get tired and a bit frayed.... Hugs and hang in there, Marie

I don't have any advice..just wanted to let you know I was thinking of you. I hate tests...and the one you had does not sound fun! ((hugs))

I had a gastric emptying study. Nothing to eat before, take an image. Eat a radioactive-tracer-laced egg sandwich, wait two hours, take another xray. Then glow in the dark.
--Kerry

my GI system has finally been examined for motility, from beginning to end. but it took forever, of constantly harping at doctors - to get the testing done.
not for the need, but harping to get the darn tests scheduled.

funny how that works. it's not enough to say - it's needed. somebody has to actually schedule the tests, then read the test, then report the test, ad nauseum.
1) swallow/throat study.
2) upper GI study.
3) stomach-emptying study, with lower GI study (as Kerry talks about).

the report on me? slow-motility, all the way through. (over much of the last 12-months, I required PEG-tube feeding.)

my Neuro says: it's all due to MG, exarcerbated by intensive use of antibiotics & anesthesia.

I still require nutritional supplementation, and have to watch my diet carefully.
Low fat chicken or haddock; canned fruits; fresh veggies, cooked; some high-protein breads (high-protein = 5grams protein/slice).
No treats or baked goods.
Can only eat small amounts of dairy or cheese. (Dairy products will grind my system right to a halt.)

It's all right: stuffing down 40-plus pills a day, keeps me full anyway!!
- Ross

It is called gastroparesis. It will make you feel like you are always full and can't breath well. Takes a long time for my stomach to empty completely. Mine is MG and autonomic small fiber related. Watch what you eat....and I should practice what I preach too.

Thank you, Kerry.
I couldn't remember the term -
- gastroparesis.

Daughter has gastroporesis as stomach is now paralyzed. She has a GJ tube in place. I had slowed down GI system but pyridstigmine has speeded that up a bit.

The esohogeal motility test is the one that tests the esophogus motility and the one Ross mentioned can test all the way through. Most of my problems right now are with the upper part and we have to retest that soon to see if it has worsened and will repeat the modified barium swallow as well. A good GI doctor is golden here. Marie

Thank you so much everyone for your input. It means a lot to me. Although, still not diagnosed with MG I really don't want yet another test. My neuro has just told me through email to keep trying with my local physicians and if they cannot help come back to see me. He was my last hope of getting diagnosed but is basically saying he's on the fence with diagnosing me with MG. The biggest problem I have and have always had is the constant throat swelling. My throat is NEVER open, no matter what I eat or drink it stays the same. The only time I did have some relief was when I did the trial of mestinon. It didn't help my eye issue (which by the way has almost resolved) but it opened up my throat. Weird huh?
So to sum this all up, 6 years and counting with no diagnosis and not being any closer to getting one. I've taken breaks in between seeing my neuro and whoever else, but still live with this problem.
I try to forget about it but it just doesn't work.

Tara,
I tried for 35 years to find out what was wrong with me. I had symptoms much longer than that. I got so tired of negative answers and tests with positive symptoms that I would give up and wait another five years before pushing for diagnosis again. So I understand the reluctance, but my problems were mainly limb weakness, and,in general, often my body would not do what I would expect it to given my general strength and abilities, and like many MGers, the symptoms would suddenly disappear at the most inopportune moments.

What is different for you is that you are much closer to a diagnosis and the symptoms you have respond to a medication that points to that diagnosis. Those are also very dangerous symptoms and other than breathing difficulties one of those most likely to be fatal. It is encouraging that the study (although small) was 100% positive for motility problems in those people who had been diagnosed with MG and given that you are symptomatic, would be expected to be positive for motility problems for you, a reason to be treated and at least provisionally diagnosed.

In other words, keep pushing, It is dangerous for you to go without treatment and if this test is what they need to document the need, I would certainly be all for it. Hang in there, b.

Tara,
I have been through a few studies. In just a year, my esophagram went from normal to moderate dysmotility. I just had a gastric emptying study and am waiting to hear the results. I know they are not going to be normal though. I would consider waiting a bit and having another study done at a later date. Sometimes you have to get worse before your health issues are visible on tests.
I know it's very frustrating!! I would consult with an ENT as well.
Perhaps it's something in that region also contributing to your throat being swollen?
Hope you get answers soon! (and relief!)
Hugs
Carly

Thank you both for your words of advice, it is appreciated. I actually work for an ENT practice and they have seen me several times. But of course, referred me to neuro. I am trying to decide right now if I want to go through with the motility study or wait till after the holidays. Everyday is the same, unless I get a cold or cough then it's worse.
I know that when I did the trial of mestinon it did help my throat symptoms, maybe I'll see if I can try that again.
Thanks!

Gastric emptying and esophograms are really simple tests with little prep required. :)
Carly