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.

Are you on any other meds, such as steroids?

Well, the Anti-Jo is an important piece to all of this. Antibody levels come and go. Whether you have polymyositis, dermatomyositis, lupus or a crossover with scleroderma (which can make lungs feel tight), you should try to see a rheumatologist to make sure what it is that you do have.

Mestinon won't help if you have one of the "itis" diseases. Why tax your body with a drug you don't need? Unless you do have MG. There are those of us with more than one AI disease!

A lot of people have disk degeneration and have absolutely no symptoms such as the ones you're having!

How do you know that antibodies (some unknown ones?) are attacking your autonomic system? Have you had autonomic testing?

Not enough diagnosing has been done for you. OR thinking! If you can, try to arrange for a bunch of testing to be done over a period of a couple of days (since you're out of town). Appointments with an endo, rheumy, and neuro seem to be in order.

I hope your docs can figure all of this out for you and get you the appropriate care! Don't let them "guess" at it! That's dangerous.

Annie

I went to Washington Univ. when I received my pos. results for jo-1. My uncle had polymyositis and it did not go well for him. I knew I needed help from someone who specialized in "itis" issues. I am a patient of Dr. Pestronk's. I could not get in to him for a year. By the time I saw him, I was feeling much better. But I had odd sensations throughout my body. They did skin punch biopsy for sfn and tested for many antibodies. By that time, jo-1 was no longer positive. He said it was too high the first time to have been a false positive, but was certain I no longer had pm. My skin punch came back positive. So, they see me once a year to check for new antibodies and to check the progression of sfn.

I have had chest xrays which were fine.


When I talked with neuro on the phone Monday, he felt that my low blood pressure and exhaustion is due to progression of sfn. It can attack autonomic systems as well as sensory.

I agree with you that I don't think I need to take mestinon without being sure of why I'm taking it. The neuro that called said that it is now being prescribed for people who are having issues with heart rate and blood pressure because of SFN.

I would like to caution you about having all of your doctoring filtered through a neurologist. A good internist is essential, as I'm sure you know. Don't assume your low BP is from the neuropathy.

Have you had baseline breathing tests done? That would be a smart thing to do, too.

The inflammatory diseases often need more than one specialist. Specialty doctors are essential. They know far more than other doctors do about a disease. While Dr. Pestronk is a good neuro, that does not mean he has the right to evaluate other diseases. Nor should anyone assume that one symptom can be chalked up to one disease, without a proper evaluation of that symptom.

I don't mean to lecture or be upset, but I have seen one too many times how assumptions can cause patients to suffer needlessly. And how it ends up with doctors completely missing what is truly going on. You deserve better care than this!

Annie

Thank you, Annie. You know you're right. I hadn't really thought much about this because I trust the doc's at WU to over see everything, but honestly maybe they are just chalking it all up to one condition. Thank you for your insight. I will definitely try to get my pcp to refer me to a rheum.

Baseline breathing: Yes, back when I had my first appnt March 2015. They said it was average for a woman my age. This kind of surprised me because I am a runner and up until that point had been running half marathons very regularly.