[ivy3200]

Hi, I'm new, and have my first appt with the Neurologist next week.
I’m a 36 year old full time RMT, wife and mother of 3. I’ve had Hypothyroidism for about 7 years now, but otherwise healthy!
About 16 months ago, I suddenly developed shortness of breath in the middle of a workout - I hyperventilated for about 45 minutes or so. I’ve always led a healthy, active lifestyle, so this was obviously worrisome. Anytime I increased my heart rate, I became short of breath, dizzy, nauseous and weak. I went to the hospital and they tested me for asthma, did an ex-ray, and an ultrasound on my chest and ECG. 2 days later, was sent back to the hospital on suspicion of Pulmonary Embolism. I was referred to a Pulmonologist, and the serious testing began… In the next 5-6 months, I had a bronchoscopy, right heart catheterization, a bunch of ECGs, Ex-rays, Pulmonary Function labs, Pulmino-cardio stress tests, a VQ scan, Pulmonary Angiogram, Chest CT, Brain CT, blood work… I’ve seen Respirologists, a cardiologist, an immunologist, I’ve changed my family doctor (he thought it was just stress - and told me at least I'm breathing, so I’m fine…).
They thought I’ve had a hole in the heart / PFO / Pulmonary Hypertension / Vocal Cord Dysfunction / HHT (I even travelled to a different city for this one) / Pulmonary AVMs, and now we are on to MG.
About 9 months ago, my Pulmonologist put me on Bisoprolol (a beta-blocker), thinking that if we could slow the heart down, then my symptoms would lessen. It worked - all of a sudden, I could walk my 7 year old to the bus again! Life was good… but not great. My days would alway start out well, and then by 12 or 1, I would NEED a nap. That is soooo not like me. I’m usually A-Type. I can’t chase my kids or play with them. I can’t go for walks, or go to the park. My face goes pale, I start gasping for air, my chest feels like a rubber band is wrapped around it, and then my steps falter, my legs begin to shake, my vision goes blurry, my tongue feels like its twice it’s size, and I start slurring my speech. Even my smile has changed. I thought these were strange effects of being de-oxygenated, but I trusted that my doctors knew what they were doing.
Last year, I had a CT scan on my chest looking for a pavm, when the doctor told me he noticed thymic tissue in my mediastinum. I thought it was strange that he went out of his way to call me on a Friday afternoon for this, but I filed the info away. My respirologist wasn’t concerned about it.
Two months ago, I went to an immunologist to get allergy testing done to figure out what my triggers are for my newly discovered asthma, when the Dr put 2 and 2 together, and recommended I see a Neurologist for MG.
Finally two weeks ago the referral was made, and I see the Neuro in one week.
I’ve had blood work done (not sure which kind), and was negative.
Should I be worried? Does this sound like MG? Or are we grasping at straws once more?
Thank you in advance!

[Stellatum]

Hi, and welcome. Always feel free to ask questions here. We understand how scary it is to be undiagnosed--and how scary it is when you get a diagnosis, too.

Myasthenia gravis is caused by antibodies your immune system mistakenly makes against your neuromuscular junctions. The antibodies block or damage the cells on your muscles that communicate with your nerves. The blood test you had was probably looking for the most common kind of antibodies that cause MG (AChR). If it came back negative, though, it doesn't mean you don't have MG. There are other antibodies that cause MG that they can test for (MuSK) and some new antibodies that have been discovered recently that there aren't tests for yet. Sometimes people get diagnosed with MG even though no antibodies have been found in their blood (we're called "seronegative").

When you see the neurologist, he will probably give you a drug called Mestinon (generic name: pyridostigmine). It is a fast-acting drug that helps a lot of people with MG. If it works for you, it's more evidence that you have MG. He should also send you for a special kind of EMG called a single-fiber EMG. This is a very specialized test that not all neurologists know how to do. A lot of us who are seronegative have been diagnosed after having a SFEMG.

I can't tell from your symptoms if you have MG, but it certainly sounds like a reasonable guess, and you should definitely have these tests! There are a lot of good treatments for MG. Please let us know how it goes.

Abby

[ivy3200]

Thank you! I will keep you posted!

[AnnieB3]

Hi, ivy. Welcome!

Did you know that they give Bisoprolol for panic attacks? They might've thought you were anxious and were using it in an off brand way! Do you have heart issues or hypertension? Or panic attacks?

In MG, we can get hyperventilation or hypoventilation from insufficient breathing, but that isn't the same as "hyperventilating" from a panic attack. It has to do with gas exchange by the heart/lungs.

I don't think you're grasping at straws at all. Weakness that fluctuates is the hallmark of MG and it sounds as though that's what you have.

You might also have something else going on. Have you been checked for B12 or D deficiencies? They are very common!

Currently, there are two MG antibody tests available: Acetylcholine Receptor antibodies and MuSK antibodies. They have found other ones, but don't have the tests, yet. Being seronegative does not mean that you don't have MG. MG is a clinical diagnosis that is backed up with tests.

Not all of the tests (EMG and Single Fiber EMG) are positive in all patients, and, sometimes, not early on in the disease process. That's the same for the antibodies. They might be positive later on.

Did you see the neuro? What did s/he say?

Have you had thorough breathing tests done by a pulmonologist? If not, I highly recommend that. They can assess if your breathing is due to a neuromuscular disease. Make sure they do MIP and MEP tests, too, which are specific to those diseases. And have them give you the results of ALL of the test results (they usually give the highest only), because a downward trend of numbers with each try is very revealing for MG patients since we get worse the more we do.

What else can we help with? I hope you'll take it easy until you figure out what's going on.

Annie

[speedwaygriff]

Originally Posted by ivy3200

Hi, I'm new, and have my first appt with the Neurologist next week.
I’m a 36 year old full time RMT, wife and mother of 3. I’ve had Hypothyroidism for about 7 years now, but otherwise healthy!
About 16 months ago, I suddenly developed shortness of breath in the middle of a workout - I hyperventilated for about 45 minutes or so. I’ve always led a healthy, active lifestyle, so this was obviously worrisome. Anytime I increased my heart rate, I became short of breath, dizzy, nauseous and weak. I went to the hospital and they tested me for asthma, did an ex-ray, and an ultrasound on my chest and ECG. 2 days later, was sent back to the hospital on suspicion of Pulmonary Embolism. I was referred to a Pulmonologist, and the serious testing began… In the next 5-6 months, I had a bronchoscopy, right heart catheterization, a bunch of ECGs, Ex-rays, Pulmonary Function labs, Pulmino-cardio stress tests, a VQ scan, Pulmonary Angiogram, Chest CT, Brain CT, blood work… I’ve seen Respirologists, a cardiologist, an immunologist, I’ve changed my family doctor (he thought it was just stress - and told me at least I'm breathing, so I’m fine…).
They thought I’ve had a hole in the heart / PFO / Pulmonary Hypertension / Vocal Cord Dysfunction / HHT (I even travelled to a different city for this one) / Pulmonary AVMs, and now we are on to MG.
About 9 months ago, my Pulmonologist put me on Bisoprolol (a beta-blocker), thinking that if we could slow the heart down, then my symptoms would lessen. It worked - all of a sudden, I could walk my 7 year old to the bus again! Life was good… but not great. My days would alway start out well, and then by 12 or 1, I would NEED a nap. That is soooo not like me. I’m usually A-Type. I can’t chase my kids or play with them. I can’t go for walks, or go to the park. My face goes pale, I start gasping for air, my chest feels like a rubber band is wrapped around it, and then my steps falter, my legs begin to shake, my vision goes blurry, my tongue feels like its twice it’s size, and I start slurring my speech. Even my smile has changed. I thought these were strange effects of being de-oxygenated, but I trusted that my doctors knew what they were doing.

~~~~~Godbless you ! iam waiting on my results been shocked legs@# hands . blood work .. thinking iam getn myasthenia gravis @ fibro .. thyroid thc low .. been 2 years of pain just got lyrica wow took 99pct of the pain away ............