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Never ever heard of this before

Diagnosed 12 years ago. Just affected my right eye. Took pills - mestonen. 2 years ago started symptoms- weakening, losing weight, until I couldn't really swallow. Then, 2 hospital visits later, I'm better but still lingering. It's kind of weird. Unknown ailment. Would love to understand more.

  1. Your symptoms and their sequence are very similar to my husband's. He had ocular symptoms for a couple years. His eye doctor knew enough to run the first blood tests, but when they were negative he let it go and so did my husband. Two years later he got a bad case of bronchitis; he was given azithromycin and levaquin, stopped swallowing and ultimately went into crisis. We learned, and he improved greatly just as you have.

    I don't write this to scare anyone. Stronger advocacy and better understanding on our part would have helped us get on the upward path more quickly. That's what we are here for. Learn more by reading GOOD sources.

    Finally, talk to those who care about you. They probably cannot see everything you feel, but want to help. That includes your local medical team. There is never anything wrong with improving your diet or incorporating a little wise exercise on your own, but establishing a really strong relationship with your doctor and pharmacist can be invaluable.

    And remember, we are all for you too. Juliana ( team member.)

    1. I'm always open to hear more about this condition. Thanks for your reply

      1. Hi , I'm glad to hear you're feeling better. You're right, it certainly is weird how this disease can present itself sometimes. With on and off symptoms... it can be so confusing and frustrating! We're glad you've found our community and hope the experiences shared here help. Please reach out to us anytime.. we're all here for you! - Pam (team member)

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