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

Mine do this randomly. It IS awful!! I have to physically push my feet on the floor to get them to unlock. I also have muscle cramping occasionally, but eating bananas, real maple syrup (tablespoon), or drinking coconut water seems to help. Also, I discovered that if I pull my legs up slightly when I'm resting or sleeping, I don't get charlie horse cramps. I can feel them coming on and this works every time. Stretching out guarantees a severe cramp.

As others have said, even if you don't have MG, WATCH OUT FOR THE HEAT!

I hate to drag this thread back up. But I wanted to touch base in case anyone else has had similar issues.

I feel almost 100% certain that my issue is not MG related. I am almost certain I have silent reflux. This past summer was horrible to say the least. I was so stressed out over not being able to swallow correctly and having difficulty getting a deep breath that I had to just walk away from online forums. Unfortunately, my doctors weren't much help either. I honestly thought I was going to die and no one would know why. My weight got scary low and my blood pressure was 80/50 most days.

My mother in law came over one night and she suggested that I try Nexium for the chest pain. I tried it for 3 days before I noticed anything, but on day 3 I felt somewhat better. Then, I started looking up gerd on my own. I had a scope in June and it showed that my esophagus was fine. So, docs said no reflux. They were wrong. It got to where I couldn't speak without pain and tightening in my throat.

I researched and found that I have all symptoms of silent reflux: trouble swallowing, breathing, terrible sore throat, nighttime cough, etc. ENT said my larynx was red and irritated at his exam. Then, he said silent reflux is hard to treat and sent me on my way with no help, but directions to come back for follow up visit in 6 weeks.

None of my docs would acknowledge this. So, I found a treatment regimen online and began self treatment (2 nexiums/day, gaviscon every time I eat and pepcid at bedtime). I took the first deep breath I had had in 4 months about a week after all the meds.

Finally found a gastro who prescribed Protonix for the next 6 months. But I can tell he's not convinced I need it because I don't "look" like a reflux patient. I am taking it and doing better. Still not 100% but I can run at a slow pace for up to 4 miles now and get a deep breath just fine. I am not pain free, but I am much, much better. My energy is soooo much better than it was. Not even comparable.

Very frustrated at how long I have suffered. Not blaming my neuro, but I told him last Oct that I was having difficulty swallowing. His response: it's not a symptom of sfn (my current dx).

I still carry the mestinon in my purse for those days that I am lagging. But I am wary of taking it knowing that my issues probably all stem from silent reflux.

You are overmedicating on the antacid drugs. And they don't come without risk.

You will now be open for deficiencies of B12, D, albumin, calcium, and iron, to name a few.

Also, you will not have as much good bacteria in your body due to no stomach acid. If you are immunosuppressed, your infection risk goes up as well.

If you don't digest your food well enough, you can get dumping into the small intestines of undigested food, which can lead to reactive hypoglycemia.

This can all lead to a leaky gut, which can lead to allergies and even more AIs.

I'm a total downer today! But you need to be aware of what this self-medicating can do.

Did you know that Mestinon increases acetylcholine, which increases stomach acid? So maybe you aren't technically someone with primary reflux/esophageal issues, but someone with secondary ones due to Mestinon.

Some things to think about.

Annie