New Diagnosis of Myasthenia Gravis
 

Hey folks,

I'm happy I've found this site. I am a 47 year old male who was diagnosed with MG about 5 months ago. The insurance company won't allow the blood tests usually used, so the neuro put me on 30mg of mestinon every 4 hours around the clock. My symptoms were a weakened voice [I pastor a church, so this was extremely worrisome], no gag reflex, and aspiration. I would also get exhausted easily and suddenly.

After one day on the mestinon, I felt like a new person. I have not lost my voice except once or twice while under extreme stress, and I have a gag reflex again. I still get exhausted, but try to budget my energy. I would say I am 80% better 80% of the time. On this reaction to mestinon, and not on any medical test, my neuro diagnosed me with MG.

I am wondering if anyone else has been diagsosed with MG solely based on their reaction to Mestinon. My neuro told me that is pretty much all the drug treats, so it is a pretty safe assumption that is what I have.

Thanks for any answers or comments.
Steve

Hello Pastor Steve,
Would your neurologist refer you to an MDA clinic for diagnostics?
If I am not mistaken, all of those diagnostic labs & tests may be totally covered under the MDA services umbrella. It's worth a call from your neuro to find out & refer you there, if possible.

I don't doubt your diagnosis. However,in the long run; it could make things easier if you could have them done to "back up the diagnosis". Social Security and insurance companies just love their piles of documentation! You may need medications in the future that the insurance company would love to deny simply because "there is no documented evidence".

Jenna

Thanks for the response. I don't see my neuro again until January, but I will certainly ask him about an MDA clinic.

Steve

Hi Steve and welcome to the forum.

Have you checked your insurance contract? I've never heard of anyone not having this blood test covered (of course I could be wrong, but it doesn't make any sense). I have a particularly sleazy insurance company which is always denying me coverage for procedures I am insured for and they're always trying to pay less than what is covered on my prescription coverage. You have to watch these guys, they have whole departments of people paid to deny coverage. My suggestion would be that you look into your contract and call them or better, write them if you think you are indeed covered and send them copies of your contract. If they are going to deny you coverage you can appeal (and make them give you written copies of any policy they are basing denial on) and you can also file a complaint with the insurance commisioner in your state (I'm having to do that right now with two bills they won't cover which are *obviously* covered according to my contract. One doc, a radiologist, they will admit is a radiologist over the phone but keep denying my coverage because they say he's a chiropractor. Aaargh).

Other than that, I agree that you should check out the MDA and you really do want to get a solid diagnosis with back up tests. You will really need that if you need to see a neuro or another doc or have an emergency situation.

Good luck and keep us informed,

Ally

Hi Steve and :welcome_sign:

It's good to have you here and I can assure you that this will be a place of tons of knowledge for you.

Unfortunately I was not diagnosed by just Mestinon. I had the blood work first and then the nerve tests next but I'm not much help in that are. But I can relate to your positive response to Mestinon. Major results immediately for me within 24 hours. It is my "get up and go" pill now and I'm so glad I can tolerate it. I also hope and pray that the day never arrives when it doesn't work anymore.

I do agree with the others, a solid dx is needed for your future....you never know what is down the road.

Thanks for joining us and we are glad to have ya!

JJ

Hi Steve and welcome.

I was diagnosed with blood tests, but mestinon certainly was a huge help in the begining.

take care
Kate

I appreciate the responses, and the encouragement. I realize there are many with more severe cases than mine, so I hope they can find some relief soon. Taking the mestinon every four hours has just become a way of life [even the 2am dose], and the results are worth the bother, so I too hope I don't get immune to the medicine after awhile. So far, along with relieving my throat problems, the mestinon has also given me some help with my hands [I thought the pain, stiffness, and weakness was from having Lyme's disease a few years ago] and I have had stomach problems for years but the mestinon has even helped regulate that somewhat. I've tried taking 60mg, but that is too much for me, so I keep it at 30mg and it works great.

Again, thanks to you all, and I pray God helps each of you.
Steve

Hey Steve,

Welcome to the group! Glad to hear you are doing so well on the mestinon. I do agree with the others about getting a confirmed diagnoses through lab work to start. Sometimes just calling the insurance company and speaking with a supervisor can resolve the problem. If not, a call or letter from your neuro may help. Good luck and hope to hear from you more.;)

Hugs,
Pat

Steve, Welcome. This is a great group.

I've never heard of an insurance company denying that blood test either, especially when they could get sued for getting in the way of someone being diagnosed and treated properly for a disease. It's just silly. Maybe if your doctor called and said you needed it.

The problem with going on only a response to Mestinon for a diagnosis is that even "regular" people can feel better on smaller doses. And people with ALS (no, I'm not saying you have that!) can get initially better. It's always best to have a solid diagnosis before taking it. You have to go off of it before the EMG's anyway and since new studies show that Mestinon can suppress the humoral immune system (which produces antibodies), it may also affect the blood test results.

Have you been tested for Celiac Disease? Of course, if your ins. co. won't approve MG tests they may not approve those antibody tests either! Have you ever had your B12 or thyroid checked?

I wonder about the stomach issue. Mestinon makes acetylcholine increase in the body. You need three things to make stomach acid: acetylcholine, histamine and gastrin. If you are missing one of those, you don't have enough stomach acid. And we lose acid as we grow older. So maybe the stomach issue is that you don't have enough stomach acid. The symptoms of too much and too little are similar. It's the food (undigested) and bile that back up with little or no stomach acid.

Sorry if I'm overwhelming you. Just trying to help based on what you've said. I hope you will seek help out sooner than January if you need it. Maybe even ask to be referred to an MG specialist for testing. Good luck.

Annie

Pastor Steve,
Welcome and hope you find this forum very helpful. I was initially diagnosed with only a visit to my neuro, but a followup with the tests were made to confirm the initial diagnosis. I was put on Mestinon immediately on my first visit to the neuro and had immediate results like you. About a month later, the tests confirmed the disease. I, like others, hope you can find a way to get the proper diagnosis with tests to confirm. In the meantime, you will be in my prayers that all will be well with you!
God Bless You,
Simon