I've had progressive swallowing issues for 7 months. For the last 4 months I've been on thin liquids.

I had a modified barium swallow month or so ago, but refused the solids. The liquid swallow apparently looked normal, even though I found it difficult.

Since then I've experienced increasing aching and fatigue of the tongue and swallowing muscles around the Pharynx (slightly more on one side than the other). Talking is hard because the tongue and throat gets fatigued, achey, and 'stiff'.

I've been examined by an ENT, and a neurologist who specialises in ALS/MND and also had a nerve conduction study and EMG done which were apparently normal.

I often feel if I did some of the tests again, particularly the modified barium swallow, I'd fail it.

Its got to a point where even liquidised soup is difficult - the swallowing is slow and weak and gets worse the more I try.

Each medic has looked at me and said "you don't have MG" when I've asked if it may be that. My eyelids droop a little, but continually and not any more when fatigued.

I'm at a loss because the medics think its in my head but the feelings and worsening is very real.

My questions are:
1. Does this sound like MG?
2. I understand most have problems with liquids first - it is solids initially for me - does it still sounds like MG?
3. How did you get diagnosed (particularly bulbar MG folk? What test convinced a neuro?
4. Is it worth trying to get Mestinon to try (don't know how though)?

Many thanks,
Flash

Ok, this is "my" area -- LOL!! Well, not funny -- but, I'm "Bulbar".

Can you still whistle? Smile -- does it look "normal" or sort of like a "snarl"? Look at yourself in the mirror WHEN you swallow. Can you SEE your throat REALLY making an effort to move when the food/drink is going down? Have you ever had liquids "float" back up into your nose after taking a drink -- sort of like water gets into your nose sometimes when you swim? Does your voice ever get "slurry" -- like a drunk or stroke victim? Do your lips get sort of "numb" feeling -- but actually, they just aren't moving very well -- and you can't "purse" them -- like you can't form a KISS or pucker? Use your tongue to feel the insides of your cheeks (I learned this from an oral surgeon). Can you feel ridges/lines -- especially close to your mouth? This indicates shortened muscle fibers.

Personally, I don't give a "hoot" if the doctor you are seeing is a neuro-muscular specialist or not. SOOOOOO sorry to say this. I think that something like 85% of MG symptoms start out as OCULAR -- and that is what some of the "neuro-gods" are looking for. I'm NOT saying that you HAVE MG -- I'm NOT a doc. BUT, if my paragraph "rings a bell", then, if I were you..............I'd get a SECOND OPINON -- SOON!! Cause Bulbar MGers are the MOST likely to go into respiratory distress -- i.e. the ones that end up in the hospital on a vent.

BTW, I was initially told that I had EITHER had a stroke OR had a brain tumor. I had done some research and was pretty sure that I had MG -- I think that they ran the blood tests just to shut me up. Actually, I LIKE the doc that diagnosed me -- I don't blame him. He was just doing what he had been taught. I like to think that we BOTH have learned from my "weirdness".

Oh, and I'm pretty sure my RNS and EMG were normal (run about 5 years after diagnosis for a different reason) -- but, my bloodwork was positive -- all THREE times -- three DIFFERENT labs!!

Should ALSO note -- you don't have to have positive bloodwork to have MG, either. You can have MG with negative bloodwork, negative EMGs, negative SFEMGs, etc. LOTS of smarter people in here than me -- they'll let you know more!!

Hi, Flash, and welcome. Reading your description of symptoms, I don't understand why the neurologist hasn't given you a blood test for myasthenia gravis. They can test for the antibodies. If they find them, that's a clear diagnosis. If they don't (about 20% of the time the antibodies don't show up on the blood test), they can test you further. You said you had an EMG, but there is a special kind of EMG that tests much more specifically for myasthenia gravis, called a Single Fiber EMG (SFEMG).

Many of us here took a long time to get a diagnosis, especially if we didn't test positive for the antibodies (we're "seronegative"). Of the seronegative people here, many of us, including me, were diagnosed on the basis of the SFEMG.

It took me 15 months to get a diagnosis because I'm seronegative and because my initial symptoms were atypical. The way I finally got one was by asking my neurologist to send me to a neurologist who specializes in MG. I think that most doctors are more than happy to give you a referral if they can't figure out what's going on. What got me the referral was a frank talk with my current neuro. I told him, Look, this is getting worse. This is really interfering with my life. I need to do something about this. I can't go on like this.

I don't know if you have MG, or what else you might consider, but I know enough about MG to know that the symptoms you describe certainly merit a blood test and a SFEMG!!! Many neuros would give you a trial of Mestinon based on those symptoms, too.

Abby

Hi Abby,

How would I know if it was a single firbre EMG?

He stuck one thin needle into me at various places. He changed needle before getting to my head for a thinner one. Not sure if that says anything?

Flash, with a single fiber EMG, the doctor puts the needle in, and then it stays in for about five minutes. During that time, he asks you to slightly clench a muscle and hold it clenched, while the machine collects the data. There are no shocks. Then he might move the needle to a different spot, and leave it there for five minutes, etc.

What makes this a bit confusing is that you may have had a regular EMG (with needles and shocks) in the same session. That's how they did mine--they gave me a regular EMG first and then moved on to the SFEMG.

Abby

I guess it was single fibre then - although he only left the needle in for about 30 seconds then moved to another area. No shocks, just asked me to clench then rest.

I had the nerve conduction study in the same session - no needles, just pads and 3-4 shocks on each bit he was testing.

I've read that even single fibre EMG can miss MG - is this correct?

[He said he wouldn't be able to stick them in my throat for obvious reasons!]

Yes, if he asked you to clench, that was a SFEMG.

We have a few people on this board who are diagnosed with MG even though their SFEMG's came back normal.

I had three SFEMG's. The first was borderline, and the second was mildly abnormal, but not (according to the neuro) enough to diagnose me. Then the neuro sent me to another neuro (I had to travel a bit) who is a special expert at diagnosing MG. He did a SFEMG and diagnosed me with MG on the basis of it.

It's so hard not to know what's going on. I hope you get some clear answers soon.

Abby

A quick update:

I went to see another neurologist today. One that was recommended by a person who has MG.

Within about 5 minutes of me rambling on about my symptoms, the neuro interrupted me and asked "have you been tested for something called Myesthenia Gravis?"

I explained this has been dismissed by my doctor and a previous neurologist, but he insisted I needed to be tested for it next.

He is recommending a blood test and the appropriate EMG. He said I'd not had the right EMG done, I needed to repetitive stimulation single fibre EMG. He also mentioned another test which is more precise (a need in the forearm or something?)

Feel both happy (someone has seen something I suspected, so I'm not going mad), and sad (hell, I might have MG). I guess on the whole its good as whatever I've got I've got and at least it looks like I'm going to be tested finally and not dismissed.

There's still a good chance its not MG but he seemed say it was definately worth eliminatinig with proper tests given my symptoms

Good, Flash!! So, at least now, sounds like you are in good hands.

Don't fret too much about maybe having MG. There are many FAR worse things. MG usually doesn't hurt -- and we are often better in the mornings, declining as the day goes by. IF you turn out to have MG, just remind yourself that you do NOT have something as serious as ALS, cancer, progressive MS, etc -- and you should be able to keep your "chin up" . With time, you'll find ways to adapt. Life with MG is "different" -- but, different isn't always "bad".