[StephC]

Good Morning

Still not confirmed Dx but after release from hospital last week (and only bcs I insisted they couldnt send me home with nothing) last wednesday/thursday I took one mestinon 60 mg each day and did get relief although short lived. I was told I have to wait for doctor appoint until 9/18. It is shocking to me that the doctors are making what is a horrible situation so much worse when they have power to help! Dont they take some sort of oath about helping people? but i digress. :-)

Anyway, on Friday/Sat/Sun/Mon I took 2 pills again definite relief but short lived plus I think all my emotional stress about health, not being functional, worried about not being able to work, losing my business, etc isnt helping.
Yesterday I took 3 pills evenly spaced throughout the day and wow, what a difference last night and today. Today is first time in about 6 weeks I felt I can work a little bit.

I had appointment with my pcp yesterday who tells me she wont give me anymore pills until dx confirmed but says neuro can diagnose by giving mestinon shot and if I respond then dx confirmed. Not sure why me telling her I am responding to pill is any different than giving me shot and me saying I feel better but since I had not heard/seen that option wondered if anyone here knows about dx via getting shot?

I cant possibly wait till September 18 so just trying to figure out what I can do in meantime.

As always, thanks for your time/insight and advice.

[BackwardPawn]

Originally Posted by StephC

Good Morning

Still not confirmed Dx but after release from hospital last week (and only bcs I insisted they couldnt send me home with nothing) last wednesday/thursday I took one mestinon 60 mg each day and did get relief although short lived. I was told I have to wait for doctor appoint until 9/18. It is shocking to me that the doctors are making what is a horrible situation so much worse when they have power to help! Dont they take some sort of oath about helping people? but i digress. :-)

Anyway, on Friday/Sat/Sun/Mon I took 2 pills again definite relief but short lived plus I think all my emotional stress about health, not being functional, worried about not being able to work, losing my business, etc isnt helping.
Yesterday I took 3 pills evenly spaced throughout the day and wow, what a difference last night and today. Today is first time in about 6 weeks I felt I can work a little bit.

I had appointment with my pcp yesterday who tells me she wont give me anymore pills until dx confirmed but says neuro can diagnose by giving mestinon shot and if I respond then dx confirmed. Not sure why me telling her I am responding to pill is any different than giving me shot and me saying I feel better but since I had not heard/seen that option wondered if anyone here knows about dx via getting shot?

I cant possibly wait till September 18 so just trying to figure out what I can do in meantime.

As always, thanks for your time/insight and advice.

I think doctors have become overly cautious about treating without a diagnosis due to malpractice lawsuits. I suppose this could be good from our perspective as we don't get medicine for ailments we may not have, but it does mean a frustrating wait. From the doctors perspective, it protects them. For example, I kinda think my doctor suspected I have Stiff Man even though she warned me its rare and likely to come back negative. She could have given me a dose of Valium to see, but instead two weeks for the test (I don't blame her--just frustrating to wait), on the other hand, my old neurologist suspected I have MG and didn't tell me surgeon because he hadn't run the tests yet. I almost died as a result. I probably had a malpractice lawsuit against him.

Anyway, just my thoughts on the subject.

EDIT: Plus insurance may want to see a diagnosis before paying for medicine.

[Stellatum]

Steph, I'm pretty sure that the shot you're going to get is Tensilon (similar to Mestinon). The reason they use it diagnostically is that since it's a shot, it takes effect right away (instead of having to enter your bloodstream via your digestive system). If you have drooping eyelids, and they suddenly un-droop after the shot, that's just about as good a way to diagnose MG as anything.

MG is so very variable. I myself really don't know if Mestinon helps me or not. Sometimes I think it does, and other times I think it's just a coincidence, because I tend to get stronger and weaker without knowing why anyway. But the Tensilon shot gives such a clear and quick result when it comes to eyelids that it's considered diagnostic. No one ever tried it on me, and I think the reason is that I don't have ptosis.

This is all just my understanding. It may be that your doctor will test the results of the shot on your other muscles, too. But I think the eyelid thing is clearest, and least subject to the placebo effect, or something like that.

I'm so glad the Mestinon helps you. Remember that (as you've discovered) it has a quite short half-life. Most people find that after 4 hours, it's pretty much done doing whatever good it's going to do. So if your doctor will prescribe it, and agree to let you work on finding the right dose for you, the usual way to increase its efficacy is not to take higher doses, but to take the doses closer together. Do be careful, though: too much Mestinon will make you weaker.

Abby

[jeatak]

I was diagnosed by a Tensilon test. my antibodies are all negative and my CT scan was negative for a thymoma, but my neuro opthamologist strongly suspected MG as my diagnosis. I then was referred to a neurologist who performed the test. He was able to do so because he sees his myasthenic patients in his office in the hospital.

The reason for extra caution in administering a Tensilon test is that the drug can slow your heart rate. Resuscitation equipment and drugs must be on hand for immediate use if needed.

In my case the test was strongly positive, it is amazing really, but the results are very short in duration. Tensilon lasts only a minute or so.

Hope this info helps

[StephC]

Originally Posted by Stellatum

Steph, I'm pretty sure that the shot you're going to get is Tensilon (similar to Mestinon). The reason they use it diagnostically is that since it's a shot, it takes effect right away (instead of having to enter your bloodstream via your digestive system). If you have drooping eyelids, and they suddenly un-droop after the shot, that's just about as good a way to diagnose MG as anything.

MG is so very variable. I myself really don't know if Mestinon helps me or not. Sometimes I think it does, and other times I think it's just a coincidence, because I tend to get stronger and weaker without knowing why anyway. But the Tensilon shot gives such a clear and quick result when it comes to eyelids that it's considered diagnostic. No one ever tried it on me, and I think the reason is that I don't have ptosis.

This is all just my understanding. It may be that your doctor will test the results of the shot on your other muscles, too. But I think the eyelid thing is clearest, and least subject to the placebo effect, or something like that.

I'm so glad the Mestinon helps you. Remember that (as you've discovered) it has a quite short half-life. Most people find that after 4 hours, it's pretty much done doing whatever good it's going to do. So if your doctor will prescribe it, and agree to let you work on finding the right dose for you, the usual way to increase its efficacy is not to take higher doses, but to take the doses closer together. Do be careful, though: too much Mestinon will make you weaker.

Abby

Thanks for your insight...i think reason not done is probably bcs I dont have as much problem with eye droop either...more muscle weakness/blurred vision. In any event, I am 100% confident the pills are helping (and 100% confident not hurting) - maybe I should offer to sign something that I wont sue for malpractice for giving me pills - lol

[southblues]

For some reason, doctors seem to be terrified to prescribe mestinon. They will give you Oxycontin, Demerol, valium, ambien, antidepressants, and most anything else with little reason. But mestinon is over the line. Does anybody understand that? It really has been my experience. I was passed around to numerous doctors before somebody would try it.

[jeatak]

I do have an eye droop and double vision which the Mestinon does no really help at all. As for the Tensilon test, the neurologist put hi hand on my forehead and lightly held it down while asking me to raise my head. I couldn't do it, I wasn't even aware my neck muscles were that weak, I just thought I must have chronic neck problems. After injecting the Tensilon I could easily lift my head and could feel the difference in my strength, bu t like I said before this only lasted a minute or two.
I have a prism for my glasses that helps with the double vision and as soon as my severe reflux problems are resolved I will start prednisone in a small dose.

[ejh2]

The next appointment you have with your neurologist just ask if they're familiar with DAP(diaminopyridine).It is experimental but I have been using it in conjunction with mestinon and the improvement in my quality of life is more than I can express in a few sentences . Good luck in your journey .
ejh

Originally Posted by StephC

Good Morning

Still not confirmed Dx but after release from hospital last week (and only bcs I insisted they couldnt send me home with nothing) last wednesday/thursday I took one mestinon 60 mg each day and did get relief although short lived. I was told I have to wait for doctor appoint until 9/18. It is shocking to me that the doctors are making what is a horrible situation so much worse when they have power to help! Dont they take some sort of oath about helping people? but i digress. :-)

Anyway, on Friday/Sat/Sun/Mon I took 2 pills again definite relief but short lived plus I think all my emotional stress about health, not being functional, worried about not being able to work, losing my business, etc isnt helping.
Yesterday I took 3 pills evenly spaced throughout the day and wow, what a difference last night and today. Today is first time in about 6 weeks I felt I can work a little bit.

I had appointment with my pcp yesterday who tells me she wont give me anymore pills until dx confirmed but says neuro can diagnose by giving mestinon shot and if I respond then dx confirmed. Not sure why me telling her I am responding to pill is any different than giving me shot and me saying I feel better but since I had not heard/seen that option wondered if anyone here knows about dx via getting shot?

I cant possibly wait till September 18 so just trying to figure out what I can do in meantime.

As always, thanks for your time/insight and advice.

[BackwardPawn]

Originally Posted by southblues

For some reason, doctors seem to be terrified to prescribe mestinon. They will give you Oxycontin, Demerol, valium, ambien, antidepressants, and most anything else with little reason. But mestinon is over the line. Does anybody understand that? It really has been my experience. I was passed around to numerous doctors before somebody would try it.

Have they performed the EMG tests, yet? Its possible they don't want to do anything that will skew the results, if they haven't.

[Janla]

Doctors sometimes give a Tensilon test, which is an injection. Now a blood test for specific antibodies is considered the best way to diagnose MG. There are several forms of MG and the blood test can determine that.

Mestinon only lasts about four hours in the body, although they have a time release pill as well.

I just came out of remission and I saw one neurologist who did the testing. The tests confirmed MG but he said he did not know enough about the disease to treat me. It will take me several months to get an appointment with the specialist. I feel your pain, but I do have access to mestinon until I see the specialist.

Originally Posted by BackwardPawn

I think doctors have become overly cautious about treating without a diagnosis due to malpractice lawsuits. I suppose this could be good from our perspective as we don't get medicine for ailments we may not have, but it does mean a frustrating wait. From the doctors perspective, it protects them. For example, I kinda think my doctor suspected I have Stiff Man even though she warned me its rare and likely to come back negative. She could have given me a dose of Valium to see, but instead two weeks for the test (I don't blame her--just frustrating to wait), on the other hand, my old neurologist suspected I have MG and didn't tell me surgeon because he hadn't run the tests yet. I almost died as a result. I probably had a malpractice lawsuit against him.

Anyway, just my thoughts on the subject.

EDIT: Plus insurance may want to see a diagnosis before paying for medicine.