You're not intruding! Everyone is welcome here!

My first question is: Have you had your vitamin B12 tested?!

Okay, your chest muscles would not be "created" by an esophageal spasm!!! And the fact that you are worse in the summer heat makes me think that you DO have MG!

Do you drink a lot of water when you are out? That would bring down blood pressure.

What MG antibodies did they do? The Acetylcholine (ACh) ones? Did they do the MuSK antibody? Did you know that there are other ones they have found but don't have test for yet? Being "seronegative" does not mean that you don't have MG.

"Regular" neurologists are not as good as a MG expert. If you say where you live, we might be able to point one out for you.

A nerve conduction test is not sufficient for diagnosing MG. An EMG and/or a SFEMG (the best test) are what experts use.

Do you have ptosis (toe-sis)? It's drooping eyelids. Although, in MG the entire face can droop, including the eyebrows, nose, cheeks, etc. And that "head droop" you mention is classic MG as well.

Take pics of your face in the morning when you are well rested and then later when you are feeling worse. You can compare them to see if you have ptosis.

DO NOT GO OUT IN THE HEAT!!! Until you are fully diagnosed, do not do that. If you have MG, you could go into an MG crisis, where you can't move, swallow, or breathe well. Now that's something that should scare you, not Mestinon!

30 mg. of Mestinon won't hurt you. You might have increase salivation, twitchy muscles, or diarrhea, but some people don't have those symptoms at all (me included). The 60 mg. tablets are scored. You can break them in half. Try one tablet the first day and see how you feel.

MG experts often start patients slowly on Mestinon. It's usually one half tab for a few days and then increase to a half tab twice a day, etc. But you have to trust your instincts and communicate with your doctor about what to do. Write down any and all symptoms when you take it. I'll put the Mestinon pdf below.

Some people take Mestinon Syrup, so they can titrate doses more easily.

With Mestinon, it's not exactly about body weight. What the drug does is to keep the enzyme called Acetylcholinesterase from mopping up Acetylcholine (muscle gas). The process of producing "muscle gas/ACh", it working on the muscles, and then the enzyme going into the neuromuscular junction (NMJ) to clean up any excess ACh is going on all the time. Because people with MG don't have enough muscle receptors for the ACh to go into, we need to keep ACh in the NMJ longer so that we can use more of it.

I honestly believe that you might have MG. You are describing fatigable muscle weakness, which is the hallmark of MG. We get worse with activity (and heat, infection, stress, lack of sleep, etc.) and relatively better with rest.

Does that describe what is going on with you?

We have 640 skeletal muscles. MG can affect any of them. MG is called a "head and down" disease, for it typically begins in the head/neck area. It does also affect the GI tract, causing peristalsis to slow. Although that doesn't happen in everyone, which is why some people take Mestinon, have a very fast GI tract due to that, and get diarrhea! Diarrhea, by the way, doesn't always mean runny. (Gross, yet useful.) It also means more frequent stools.

You really need to get some help. And do these doctors understand that patients can have more than one thing going on at a time? Have you had your thyroid checked? Your vitamin D? B12 and D deficiencies are very common, especially for those with autoimmune issues.

Don't be afraid to take 30 mg. of Mestinon! It won't paralyze you! Of course, I don't know your medical history and can't make any promises because I'm not a doctor!!! But I can tell you that our Gulf War vets took it and were fine.

I can also say that Mestinon kicks in after about 30 minutes of taking it. It wears off two hours after that (after the 30 minute point). So you at least know that there is a brief window of time when it is working in your body!

Please seek out more help. I'm very concerned that you didn't receive the best care and could possibly have a myasthenic crisis if you do have MG. PLEASE don't do any physical activities until you know for sure!!! And definitely cool down immediately if you get at all hot. The summer is when many MGers go into a crisis purely due to the heat. There's a scientific reason for it!

Do you have any more questions?

I hope you'll get better help soon!!!

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 29 views)