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!