[craftyRCC]

My neuro plans on starting Mestinon after my SFEMG in a few weeks.

How many of you have been started on "Presumptive Treatment" before an official diagnosis? I'm guessing this is the norm.

I'm anxious to start but very nervous at the same time!

Thanks,
Rachel

[Stellatum]

Rachel,

I was prescribed Mestinon before my antibodies test and SFEMG. I hope the Mestinon works for you! I was really worried about the side effects, but it doesn't bother my stomach or digestion at all, even if I take it on an empty stomach.

Abby

[pingpongman]

Yes they started me on Mestinon 60mg 3 times a day. After a couple weeks added 180mg slow release at night. Went to doctor yesterday and the Mestinon helped my muscle recovery time but has done nothing for my eyes. He added Neostignine 5mg yesterday and increase that to 10mg after one week. He is hoping this will help my double vision and droopy eye lid.

Hope the Mestinon works better for you
Mike

Originally Posted by Stellatum

Rachel,

I was prescribed Mestinon before my antibodies test and SFEMG. I hope the Mestinon works for you! I was really worried about the side effects, but it doesn't bother my stomach or digestion at all, even if I take it on an empty stomach.

Abby

[AnnieB3]

Rachel, Well, since he is waiting for you to start it until after the SFEMG, it's not really "presumptive."

Your doctor must have strong evidence that you have MG. Were your antibodies positive? MG is technically a clinical diagnosis backed up with positive test results.

Try not to be nervous. When I first took Mestinon, it was amazing. I don't have the stomach upset that some do. All it did was to make me stronger, which is very exciting. He doesn't want you to take it before the SFEMG because it would affect the results. I think that he is talking about this is a good thing. It shows he has confidence in the diagnosis.

I hope you will get solid answers and be able to get on with having your MG treated.

Annie

[craftyRCC]

I feel very lucky to have "found" my neuro purely by accident. My PCP did a neuro referral while I was in the hospital. It was determined at that time to be a Vit B12 problem.

I saw my neuro again about a week after discharge, he ordered the antibody tests that day and an EMG two weeks later. When I went back for the EMG he said he had one more test he wanted to due for the MG, it was the MuSk antibody test but we needed approval from my insurance company. We waited almost 6 weeks for them to deny the test. They felt there wasn't enough clinical data to support the request. Antibodies were negative at the time, EMG was normal. So when I spoke with my neuro I turned into a crying fool on the telephone, I was sure the only way to know for sure about MG was the MuSk test. He referred me to the Neuro-diagnostic lab at UPenn for the SFEMG, and decided to start the meds after the test.

So just by accident I ended up with the MG guy in my area, I thank God every day for sending him my way! When I read how long some folks wait just to find the right neuro I know just how lucky I am.

I'm a nurse so I don't make a very good patient. I know I need to be a patient patient, all my doctors keep telling me to stop being a nurse for a little while and just be a patient! I could think of so many neurological things that could have been wrong, I never thought of MG, all I had ever heard of was the ptosis,I knew very little about MG before all this started, I'm learning more everyday. With all the info on the web and all the first hand experience the folks on the board have to share I know it will all work out!

Thanks again for sharing all your knowledge!
Rachel