[mw3kgt]

I'm a 27 year old Male.

I was just diagnosed about a week ago, only 3 weeks from the start of any major symptoms, double vision, tired, short of breath. It progressed extremely fast in those 3 weeks. I guess I should count myself lucky on this fast diagnosis.

2 weeks in I got a recommendation to see an eye doc, lucky for me he spouted of this MG thing that I had never heard of. Went to the hospital for the blood test immediately. An ER visit for trouble breathing and a few other doctors later that had no idea what they were doing I got word from my eye doctor that said I was positive for MG, 4x the accepted level.

So now I'm on mestinon 3-4 a day and just started the prednisone today after the mestinon did nothing for me. I have a ct scheduled for tomorrow of my thymus and my first neuro appointment in a few weeks.

That's all for today I guess.

[Stellatum]

Hi. Welcome and thanks for posting. It's encouraging to hear another story of an eye doctor who is on the ball. Some of us had trouble getting a diagnosis until we saw neuro-ophthalmologists.

I'm sorry the Mestinon doesn't help you. It doesn't help me, either, but I have the impression that it helps most people here. I think you will see results from the Prednisone. There are other immuno-suppressant drugs (like Imuran) that are sometimes given along with the Prednisone after you're stabilized. The idea is that these drugs help you reduce the Prednisone dose.

It's great you're having a CT-scan. That should always be done when MG is diagnosed or suspected.

Please keep us posted, and feel free to ask any questions. I think it's unusual for MG to come on so suddenly and progress so quickly.

Abby

[suev]

Welcome! How unusual and wonderful that you received a dx so quickly! And it is good that you are getting a ct scan.

Pls let us know how you're doing as you adjust to meds etc. And always know that there are a bunch of folks here who will listen and who will share their experiences in answer to whatever questions you may have as you travel this path.

[alice md]

Originally Posted by mw3kgt

I'm a 27 year old Male.

I was just diagnosed about a week ago, only 3 weeks from the start of any major symptoms, double vision, tired, short of breath. It progressed extremely fast in those 3 weeks. I guess I should count myself lucky on this fast diagnosis.

2 weeks in I got a recommendation to see an eye doc, lucky for me he spouted of this MG thing that I had never heard of. Went to the hospital for the blood test immediately. An ER visit for trouble breathing and a few other doctors later that had no idea what they were doing I got word from my eye doctor that said I was positive for MG, 4x the accepted level.

So now I'm on mestinon 3-4 a day and just started the prednisone today after the mestinon did nothing for me. I have a ct scheduled for tomorrow of my thymus and my first neuro appointment in a few weeks.

That's all for today I guess.

predinsone can initially make MG worse. If you are already experiencing breathing difficulties it is important that you will be under close supervision. I would not wait a few weeks for the first neuro visit.

[mw3kgt]

Originally Posted by alice md

predinsone can initially make MG worse. If you are already experiencing breathing difficulties it is important that you will be under close supervision. I would not wait a few weeks for the first neuro visit.

Well I was bound to end up back in the ER without it.

And I don't know how it is where your located but I made the neuro appointment before I even knew I had MG, most neuro's had a 1-2 month wait.

[alice md]

Did you try calling the neurologist's office and telling them that you have myasthenia with breathing difficulties, and was started on prednisone (at what dose, by who?)
I believe that they will see you ASAP in that case. If not, you better find another neurologist anyhow.

[Kage12]

I'm new, too, and your thread, mw3kgt, made me want to post. I, too, had a neuro-optha dx me. I'd had a borderline AChR binding test 2 mths prior (with a terrible neuro), and the neuro-optha dxd me with MG "regardless of what the blood tests show" but ordered one more round of tests anyways. This time he added modulating, blocking & MuSK. Binding came back positive & I found out on 10/25. Since he felt it was likely systemic and not just ocular he is sending me to a neuro for treatment. I go on 11/16 and will have an EMG done. I would say it only took about 8 or 9 months to dx, but that's only after the worst symptoms of double peripheral vision and blurriness in the right eye, along with mild pstosis. I realized after I began my pursuit for a dx that I had had a droopy eye over a year ago that went unexplained. I had attributed it to allergies at the time.