Thanks for letting me intrude on your board. I would appreciate anyone's advice or shared experiences with this medication. Part of me thinks I should give it a try. But another part of me is terrified. I am 30 miles from the nearest hospital... the two options are subpar to say the least. I am afraid that if I had a bad reaction no one would be able to help me.

I have small fiber neuropathy and I have been doing fairly well once I found out what was going on. However, I have been having issues with swallowing and a "tight" chest since December.

I am a runner and was running 25-30 miles per week until a few months ago. I am finding it difficult to walk/jog more than 1.5 miles currently. I had a pretty scary incident with my chest muscles in May while weight lifting (nothing too heavy). Through process of elimination, my neuro feels that I am having esophageal spasms. I still have them a few times a week, but nothing like the first time. They seem to be brought on by heavy breathing--when I try to run or exercise.

This summer my body is quitting. It is on strike. My blood pressure is very low and some days I am too tired to hold up my head.

I have been tested for MG---no antibodies, all other blood work normal, and nerve conduction test inconclusive because "patient couldn't relax."

Yesterday, my neuro (different one) suggested that I try mestinon for my autonomic symptoms. I am afraid of it.

I have read that some people become paralyzed on it. I am also afraid of anything that might trigger the terrible chest spasms. It feels as if a tennis ball is stuck in my chest when it happens.

He had stated on the phone that he would be giving me a small dose. However, an email from Walgreens said it is 60mg. I can't take that much. I know my body. I weigh 105, am 5' 2". That looks like way too much for me.

Dear Teachermom,

I take Mestinon. For me, it's been a very helpful medication with few side effects. This seems to be true for a lot of people, and doctors consider it to be a pretty safe drug. It wears off quickly, which is both a plus and a minus, I suppose. In terms of trying it, that's a plus, because if you did have any uncomfortable symptoms, they would probably wear off in a few hours.

I think most people start with a partial dose. When I began taking it, my doctor suggested taking 1/4 tablet doses for a few days first, then 1/2 tablet, and finally the full 60 mg pill. You could contact your neurologist and ask about starting the Mestinon this way. Sometimes patients find that 1/2 tablet, for instance, is all they need to help their symptoms, and they remain at that dose.

Esophageal spasm is very uncomfortable, and it sounds like the other problems you are having are difficult, too. If you decide to try the Mestinon, I hope it really helps!

Best wishes,
Erin

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)

My b12 is fine but I take a sublingual supplement anyway. I was on levo my thyroid was 4.1 before. Now 5 years later 1.7 but I was experiencing extreme fatigue anyway. Neuro said to stop it. Been off for 3 weeks. Blood pressure is very low. I live in a rural part of arkansas but my Neuro is in St Louis at Washington university hospital. I see him once a year. But have frequently talked on phone with Neuro. I m not seeing the same doc who initially did bloodwork.

What did your neuro say to stop? The thyroid med?!! Why? Being between 1 and 2 for TSH is ideal. It wouldn't cause fatigue if it were at that level.

There are MANY causes of fatigue/sleepiness. A thyroid condition is only one of them. MG is another.

One of the first signs of MG is needing to take a nap.

A neurologist is not an endocrinologist. They shouldn't act as one either. Going off of a thyroid med can be dangerous! In fact, that alone could cause weakness and put someone into a MG crisis!!!

There are MG experts at Washington University. Please find one!

I'm sorry you live so far from care.

Annie

He took me off of levo (I was only on 50mcg) because my weight kept dropping. My PCP is the one who prescribed the thyroid meds because of fatigue years ago. I have never seen an endocrinologist. At first it was wonderful. For the first time in my life I had normal body temp and blood pressure. But the fatigue came back this summer (and last summer and the summer before) and my thyroid was 1.7. He felt that the current problems are not thyroid related but because my body is attacking my autonomic system now.


I tested positive for anti-jo 1 last year. This antibody is associated with polymyositis. However, no other blood work came back supporting this. My neurologist thinks that I had it because my antibodies were so high but no longer do.


I do not necessarily feel tired and often find it difficult to take a nap. But my body is exhausted. It's like my brain is going 90 to nothing and my body just won't go with it.

My face seems fine. I cannot recall having my eye droop at any time.

I feel certain that I do not have MG. I have a small lesion on c5/c6 (from disk degeneration). I feel like this is causing muscle tightness in my chest and probably explains why my neck gets tired so fast. Even wearing a necklace seems to irritate it. My muscles in my neck, shoulders, and chest have been tight for as long as I can remember. When I move or stretch my arms, bones in my chest pop. It's like they are working too hard, rather than not hard enough.

Are muscle spasms and tightness a symptom of MG because when all of this began for me that was my worst issues. My legs and feet would curl at night. It was awful.

Hi. I was a runner as well pre-MG diagnosis. Same weight and height. I was diagnosed with Ocular MG in June 2015. My neuro-opthalmologist put me on Mestinon in September 2015 for double vision and eye fatigue in September 2015. He wanted me to start at 60mg 4x daily and bump up to 120mg over about 2 months. Hahaha... NO. I know my own body as well and that was TOO much. I instead started with 30mg (half tablet). This was a good starting dose for me. I had mild side effects for about 5 months - similar to drinking too much coffee. I also HAVE to take it with at least a small meal otherwise I get stomach upset. In May this year, I got my generalized MG dx. I now take a half tablet for my 1st and 4th dose and 3/4 table for my 2nd and 3rd. Sometimes I have to take a 3/4 dose to start the day, but not often.

When I returned for my follow-up appointment with my neuro-opthalmologist several months after starting the Mestinon, I told him that I had adjusted the medication to suit my symptoms and provide me the best benefit. He replied he normally would be upset with a patient doing this, but in the case of Mestinon & MG, it ("titration") was an appropriate course of action to take because each person with MG is different and responds differently to medications.

You could try starting with a half pill (30mg). If you have more than just mild side effects, try a 1/4 pill. If that doesn't do anything, try a half pill. I hope the Mestinon helps you. It has made a difference for me, but unless my upcoming thymectomy is a smashing success, my running days are over. The loss of this, unlike the Mestinon, has been a hard pill to swallow.