Myasthenia Gravis Support Group

For the past 4 weeks I've been having issues swallowing solid foods and occasionally saliva and liquids. I have the barium swallow test today and they found nothing, My neuro didnt ioffer any other support on this and i dont know what to do next. So I guess its MG related. I did have swallowing issues when first diagnosed but once i got on the mestinon I was fine. I have started with small meals and i have discovered that if I plug my nose i can swallow without choking. Anyone else deal with this? Any words of advice?

Also around the time all this started i did have lots of dental work done and a cyst removed on my back. I was also on bactrim antibiotic.

I also had the swallow test. This was done after I was diagnosed with MG but before my symptoms became serious. My daughter is a speech pathologist and explained that the swallow test is frequently normal for MG patients and that my swallowing problems were therefore most likely MG related. She was certainly right about me. About 2 months after I had the swallow test my MG spiraled out of control with ptosis, speech, swallowing , blurry vision and shortness of breath. So I would hazard a guess that your MG is responsible.

But your neuro's attitude about it doesn't sound right to me.

Is the neuro an MG specialist? If not it sounds like it may be time for you to seek one.

My Neuro is not an MG specialist but if needed she sends me to Hershey Med Center where I there are specialist. I've been to them once because I was on pyridostigme (dang generics)! and having horrible head tremors. They said either A. You don't have MG and never have had it or B. it's the drugs. So they re-tested me for MG...after 20 years these guys are second guessing my original diagnosis (done in ohio). It was the pyridostigme so I switched back to mestinon and tremors stopped. My neuro is confused because it's not liquids that are causing the problem. Usually MG patients have trouble with liquids not solids.

I will call my neuro's office and see if I can get an appt with the specialist again. Which knowing the Hershey docs they will want to repeat the test. I'm pretty sure it's MG related myself but it's a new problem in regards to the MG. Annoying too! Since I "gulp" when I swallow I get lots of heartburn and gas. So I eat small meals instead of the 3 big ones. I eat so slow. Takes me an hour to finish anything. I'm just hoping it goes away!

I have trouble with solids too. MGers are not all alike.

and my doc should know that. I'm totally not the normal Mg patient. I take 30mg of mestinon 3x a day but half the time i forget it. I need to remember to take that...before meals...and see if it helps. I called neuro office and waiting for call back. I want to go see the specialist.

My need for Mestinon fluctuates. I have been down to 1 a day and as high as 12 ( which was too much). Currently I take 4-6 a day.

Taking some 30 mins or an hour before meal does help some.

Post edited by: bebes, at: 03/09/2011 08:39 AM

i DON'T KNOW IF THIS MIGHT HELP BUT.......

Mestinon is a bandaide drug and only lasts in the system for about four hours, also the mestinon takes about 45mins to get into the system so...you need to take your mestinon about hour three and a half so that when the last pill runs out that you have another one on board.. I have taken as many as one to 15 in a day.. When I'm well I take a mestinon 30mg every four hour.. When I'm not feeling well or overly tired I will take 60mg every four hours..

I have had to play with my mestinon quite a bit.. and I can tell when I need some extra and I many just add 15mg to that dose..

YOU WILL KNOW IF YOU HAVE GOTTEN IT TO MUCH MESTINON believe me !!!!! So try many adding 15mg more and see what happens

Hope that helps Jessica

I am new to all this, and as my name implies, am searching for answers...my DD is taking Mestinon, but I was under the impression that is just another name for the drug pyridostigme (sp?)but your post makes me think otherwise. Is there anyone who can explain? Is one a generic?

DD has VERY quick improvement with Mestinon, but VERY short-lived...there is NO way her dosage (she is considered to be taking 'brittle dosing')can last even an hour.

Since her diagnosis is so new and her symptoms are mostly ocular, we are not moving into any other dosage or any other treatments until she has been seen by specialists in BOston.

I hope we can all continue to provide answers and support for each other on this confusing journey.

Until soon,

A's Mom

Pyridostigme is the generic form of mestinon. Mestinon is very expensive and most insurances won't pay anything toward it. I took the generic for years but then started with the bad head tremors so I went back to mestinon.

Sorry I can't offer help with the ocular MG . I hope you get your answers at the specialist.

a's mom hope you can get some help in boston. like your daughter my symptons were primarily ocular. i started on mestinon,pyridostigme is the generic name for it. i did not do very well on the mestinon i started having bad muscle spasms starting in my feet and continuing up into my back and abdomen by the time i stopped taking the medicine. you may have already read i am sero-negative all the blood work has been neg, the sfemg was the deciding factor for me. the tensilon test was not even brought up even though i knew about it i just thought they didn't do that test anymore.

best of luck with boston.

quilter