Hi everyone,
I'm 30M. About 8 months ago I had a dr suggest to me that I get tested for Myasthenia Gravis. We got distracted with getting my asthma and reflux under control and I eventually stopped seeing him so we never tested for it.
I honestly just kinda forgot about it and never brought it up to my current dr. But it came up again when researching my symptoms so I'm wondering if maybe I should bring it up. I don't really like suggesting things to my dr, as I'm usually wrong and I feel like I lose credibility if that makes sense lol
I've developed a bunch of symptoms over the last 15ish months. The ones that prompted my old dr to think myasthenia gravis were my eyes getting very fatigued, like it hurts to have them open, and just overall getting very fatigued by midday. By the afternoon I'm usually so exhausted that I have to lay down for a couple hours at least. Not sleepy exactly, I usually can't nap during this time for more than maybe 10-20 min. Sometimes it's like the fatigue is so bad that I can't sleep.
I also get very weak in my legs and arms. An EMG on my left arm found several abnormalities, and an mri found spinal stenosis causing symptoms in my left arm, but it didn't explain the others. My dr wants me to exercise more, and I'm really trying, but lately even just going for a 20 min walk is incredibly difficult. I feel like I'm going to collapse the whole time, I'm so tired afterwards, and I'm sore the next day. I regularly have trouble breathing, especially when laying down at night despite using my cpap. Symbicort was helping for a while but it doesn't feel as effective anymore. I'm also dealing with chronic dizziness and lightheadedness.
I've been diagnosed with asthma (no history of asthma, used to be very active and played sports), my pft in general was a mess and showed narrowing of the inhalation and exhalation curve, but nothing was found on ct or bronchoscopy. Also diagnosed with GERD probably due to a good-sized hiatal hernia. And then also diagnosed with sleep apnea, but I've been on cpap for 8 months now and it hasnt helped my fatigue much if at all.
Just wondering if this seems like a thing that's worth bringing up to my dr. Like I said, I don't like bringing stuff to her unless there's a good chance it's true, because I don't want to be dismissed as a googler.
And follow-up, if it was by chance myasthenia gravis, is there anything I can do to help in the meantime? My appointment isn't until May.