Recently Diagnosed
 

After a hellacious EMG and blood work (negative for antibodies, but all symptoms point to MG) I have been diagnosed with MG as my neurologist can't figure out what else it could be. I have weakness in my neck, both legs, occasional blurred vision, and occasional difficulty swallowing. I am normally an athletic person (former runner and triathlete) and a gymnastics coach. I was shocked when my muscles just sort of "slowed down" and there are times when my legs just give out. I am on Pyridostimine as of yesterday hoping that this will address my weakness. My question is if I do have MG, why do I have no eye or mouth droop or is it just one of the many symptoms? Also, why would the antibody test come out negative, yet my symptoms scream MG?

Thank you in advance for your help!!

Hi, Rechelief. Welcome to the forum!

There are other MG antibodies. There are the AChR, MuSK, and LRP4 antibodies. Testing negative for antibodies does not mean that you don't have MG.

If you have blurred vision, more than likely you have ptosis/droopy eyelids. A neuro-ophthalmologist can do specific eye tests that show if you have double vision (which can be misinterpreted as blurry vision) and droopy/fatigable eye muscles.

Have you taken photos of your face? If you take a pic when you are relatively okay and then one when you are worse, chances are that you'll see a difference in the photos.

If you can find a MG expert, that would be smart. Before other drugs are given to you, that might make the signs of MG disappear, it's good to see an expert to make sure of the diagnosis. Regular neuros sometimes don't know enough about MG to make a definitive diagnosis. You probably have MG. But having an expert look at the diagnosis and answer questions for you is very helpful!

MG is pretty unique due to the fact that muscles "fatigue." The muscles become weaker the more we do and relatively better with rest (and drugs). The only other diseases that do that are LEMS (Lambert-Eaton Myasthenic Syndrome) and a CMS (not an autoimmune disease but a genetic one). They all affect how much acetylcholine is making it to the muscles.

Yeah, those EMGs can be pretty much like torture! :cool: But you survived! The Single Fiber EMG is another test that they do.

If you live where weather is warmer, please be careful. Heat from weather, exercising, or a fever can make MG rapidly worse. Stress, lack of sleep, surgery, and many other things such as the wrong drugs can make MG worse. If you need more info, you can go to Home for more specifics.

I don't want to scare you, but if you do get to the point of not being able to move, breathe, or swallow well, that's the time to be in an ER. Dialing 911 is preferable. Some people with MG have a "MG crisis," where the situation becomes life-threatening. Many people have had a crisis and have been fine (because they sought out care right away). So don't be too alarmed. Just be prepared for that "what if."

You'll also need a good pulmonologist. Neurologists and pulmonologists work together in a hospital setting to care for MG patients. Having breathing tests will help to determine what your baseline (good breathing) is and how much worse things are if you tank. A pulmonologist can also assess how things are going if you are worse but not seriously bad. Neuros can't do that (breathing tests, arterial blood gases).

What else do you need?

There is a lot to know about MG. Take some time to adjust to this reality. But first, try to see an expert.

Doctors have an algorithm for treating MG that might not be right for you. They tend to throw Prednisone at patients right away, instead of other treatments. The problem with steroids is that they come with a catalog of side effects. Only you can decide what treatment plan is right for you. Just do some research first. Although, if you are doing poorly, you may need something soon. Some experts are now recommending steroids only for when patients have a crisis. IVIG and plasmapheresis are also used.

This is a lot to take in! I can tell you that I've had MG my entire life (only diagnosed at 41), and I'm still here! No one can predict how the course of a disease will go for each person though. Please seek out an expert to help you!

Annie

Thank you Annie!!
 

Annie - thank you so much for the advice and help!! Luckily they aren't even recommending steroids. In addition, my neuro sees a number of MG patients and has me on Pyridostigmine (plus Neurontin for my neuropathy). After a 4 week trial on this med to see how it works, she will include physical therapy as well. I will see if I can get a pulminologist recommendation from her as well. I already have asthma so it's definitely a good idea. The unfortunate part is that I live in Florida and summer is coming up so thank you for the heads up on the potential for flare ups in the heat.

Thank you again!!

Well, does your neuro know that Neurontin can make MG worse?! I do not like when doctors don't diagnose before dosing pills.

That's the problem with throwing a drug at a problem instead of a diagnosis. What if your neuropathy is from a B12 deficiency? No amount of drugs will make that better (except methylcobalamin B12). I know what I'm talking about. I had a severe B12 deficiency back in 1997-1999. Many doctors missed that. I have nerve damage now, even after taking B12 every day since then.

Okay, now I know your neuro is not well-versed in MG (no offense meant). Physical therapy for MG? The more we do, the worse we become. PT can work to kneed out tight muscles, which can occur with MGers. But PT will not get rid of muscle weakness. And that won't help a neuropathy either.

Find the CAUSE of what is going on!

Be careful while taking Mestinon. Mestinon caused asthma for me. The drug can also make asthma worse. Do you take inhaled Flovent or Advair? Since Flovent does go systemic, it does help somewhat with MG. But a steroid can mask the signs of MG, like antibody tests!

Out of curiosity, what dose amount are you on of Mestinon/Pyridostigmine Bromide? How often are you taking it? That schedule can take some adjustment over time. More of a dose isn't necessarily better. Some people do better on a consistent dosing schedule (like every 3 hours).

What part of Florida?! Dr. Allan Weiss is in St. Pete. He studied under Dr. Howard (NC). They are both MG experts. He is the one who diagnosed me. I can't say enough good things about him! If you can see him, that would be great.

Allan Weiss, St Anthonys Neurology Group - Neurology Doctor in Saint Petersburg, FL

Yeah, the heat and humidity are rough in FL. You have to stay out of it if you can!

I'm glad you're saying more things about your doctoring! We're not doctors but we do know how MG works. Whenever a doctor wants to give you a new drug, you have to research whether that drug will make MG worse. There are many that can.

Make sure the pulmonologist runs MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). Those are specific tests for neuromuscular diseases. And get ALL of the numbers, not only the highest/best one. Just before my MG crisis, my MIP went down with each try. No one paid attention and I ended up in the hospital for a week.

Keep asking those questions! ;)

Annie

Annie,

My B12 was normal in a very recent test (pernicious anemia runs in my family so I have maintained my B12 supplements over the past 5-8 years including at times patches). I am on Mestonin 60 mg 3 times a day and on Ventolin for my asthma. I currently live in the Orlando area, but will be moving closer to my elderly parents on the East coast, so St. Pete is about a 3 hour drive from that area. I researched conflicting meds with Mestonin before I started taking it and Neurontin wasn't on the list. Does it counteract the effects of the Mestonin?

Since Pernicious Anemia runs in my family, I have taken B12 consistently over the past 5-8 years and my very recent test for B12 was normal. They also tested my thyroid, B6, Copper, etc. and all were normal except the B6 which was elevated due to a supplement I take so I had to stop taking that one.

I take 60 mg of Mestinon 3 times a day and use Ventolin for my inhaler (I already have mild asthma). Gosh I didn't know Mestinon caused breathing issues - that seems counter intuitive to me.

We are in the Orlando area, but moving to the East coast soon to been near my elderly parents. Dr. Weiss would be about a 3 hour drive from there, but if he can help me then so be it.

Great post Annie as usual. My sister sees Dr Weiss. Getting ready to try Solaris

If there was too much B6 in your body, that might have caused the neuropathy.

Mestinon makes breathing better in MG due to giving Acetylcholine more time to stick around in the neuromuscular junction. So it does make breathing better in that respect.

What I'm talking about are the muscarinic effects of Mestinon. The drug can cause increased bronchial secretions. There are more articles in PubMed on this topic (search "acetylcholine asthma" or "Mestinon asthma"). See the PDF below.

So you don't take anything but a rescue inhaler for asthma? Really? Do you have ongoing asthma or sporadic due to seasonal allergies? Watch for an increase in symptoms while on Mestinon. You might not have any issues with Mestinon in that respect! I already had bronchial hypersensitivity before taking Mestinon.

B12 patches won't help as well with pernicious anemia or if your family has the MTHFR mutation. Only methylcobalamin B12 via the bloodstream (some through GI tract) will help. Sorry that runs in your family. What runs in mine is achlorhydria (lack of stomach acid). If someone can't digest food well, nutrients can't be absorbed by the small intestine well.

Has anyone tested your methylmalonic acid or homocysteine? Those will be elevated if B12 isn't making its way to the tissues. I hope you're taking methyl-B12 and not cyano-B12.

That drive might be worth it, if someone else can take you! Just one appt. with Dr. Weiss in invaluable. He can recommend treatments, etc. Dr Howard is at UNC.

Info on Gabapentin/Neurontin. The first one is from 2017.

Review about gabapentin misuse, interactions, contraindications and side effects. - PubMed - NCBI

Gabapentin-induced exacerbation of myasthenia gravis

Gabapentin may be hazardous in myasthenia gravis. - PubMed - NCBI

The drug companies really don't like anyone saying that people can't take their drugs! Ketek/Telithromycin is another "do not take" drug for MG. Quinolones now have a black box warning to that effect, even though there are some people who can handle them.

Do you drink caffeine? Caffeine does the same thing as Mestinon. They block Acetylcholinesterase (AChE) so that we can use acetylcholine longer. That enzymes "mops us" Acetylcholine (ACh) when it is done with its job of making our muscles strong. Too much caffeine + Mestinon might cause overdose symptoms (again, see PDF).

Some drugs can increase Acetylcholinesterase (enzyme).

If you ever have questions about how a drug effects MG, other than the many sites out there that list contraindicated drugs, do a search of "acetylcholine + the drug."

Is your brain exploding yet? ;)

Thanks, Mike. I hope your sis is okay on that drug.

Annie

This may be off base, but I had to bring it up. Might you have MS instead of MG? I just couldn't shake the symptoms such as neuropathy in the lower legs and leg cramps. I would suggest a 2nd opinion to make sure you have MG. Not that I'm doubting you or your symptoms. But sometimes diseases can mimic others.

Do you have any eye symptoms? Any other sensory symptoms?

Doctors can make mistakes. We all can. You need to be confident that whatever is going on has a definitive cause.

Take care,

Annie

That was something I had been wondering about as well. I told my neurologist that sometimes I feel like my legs are heavy but they seemed to be focusing on my muscle weakness. I do have eyesight issues including intermittent double vision and blurriness. I also have occasional problems with swallowing. One weird thing is that have no reflexes in either of my ankles which seemed weird as well. Yes, a second opinion may be in order.