[Stellatum]

I've been wondering whether to switch to a new neuro--the MDA recommended one who specializes in neuromuscular diseases (there's not an mg specialist in my area). But I'm worried that since there's no lab evidence that I have mg, a different doctor will take away my mestinon.

So, I saw my present neuro today, and he is sending me to the very doctor I had wanted to see--and I didn't even have to ask for a second opinion. It was his (my current neuro's) idea. He said he doesn't want to start me on an immunosuppressant drug without getting me evaluated by an expert.

That makes sooo much sense. It also gives me more confidence in my present neuro.

He also told me I can take five 60-mg pills of Mestinon a day. I told him that they only work for two and a half hours--I have been taking them every three hours, so that leaves me with a gap of almost an hour, between when the old pill wears off and the new pill kicks in. He says I can space them closer together--as close as every two hours if I want.

From what I've read here, that's a bit unusual, isn't it?

[neutro]

I would say he is a sensible neuro...he is not in your shoes and if you told him Mestinon wears off in your case in 2.5 hours then take it every 2 or 2.5 hours!
He was also cautious to set you with a daily limit: 300 mg/day, it's up to you to manage that quantity according to how you feel.
Continue to observe your condition, it's possible that the previous 2.5 hr cycle could change.
One last word, the 300 mg/day has no magic, I've been taking up to 540 mg...and I'm now down to 300 (8:30,10:30, 13:30, 5:00, 8:00 and 11:00 and no more TR.
Call your your neuro if you have difficulties meeting it!
Maurice.

[AnnieB3]

This is my opinion, based on my conversations with the neuro I saw for 7 years who is an MG expert. And my experience with Mestinon. I'm sorry if any of this upsets you. Again, this is only my opinion and I have no idea of what your situation is.

Taking Mestinon every two hours is way too soon for you. You haven't been taking Mestinon for very long. My neuro won't even prescribe it that way for me and he knows how methodical and sensible I am. I think he would if I said it was absolutely necessary but it isn't. That regimen is normally reserved for MGers who have really bad MG.

The other thing that I think you are doing is looking to Mestinon to make symptoms go away, as if taking it every 2 to 2-1/2 hours will make everything okay. Maybe I'm reading into that but taking it that often can be dangerous. The varied strength of Mestinon is a reality of the drug. And MG as a disease. Again, increasing amount or frequency too quickly is not a good idea if you don't know what it's going to do to you. You do not want a cholinergic crisis. Then do you wait until the drug wears off to dial 911 if you do? This can be a very tricky situation with Mestinon, whether you have too much or not enough.

I think it's very prudent to get a 2nd opinion. Your neuro does sound very sensible. You don't want immunosuppressants if you don't know 100% that you have MG.

You are going to have to be ultra sensible if you try Mestinon spaced two hours apart. Do it during the week when someone else is with you. Do it during "office hours" in case you need to call your doctor's office if it doesn't go well. Be prepared to have to go to the ER to get atropine, in case you have symptoms of an overdose. If you don't' know what those symptoms are, read up on it first! If you do overdose, not being able to talk is one of the things that could happen. Do you have someone around you who knows what to do if that happens? If you live alone, do you have a recording to play into a phone if you can't talk?

Just think these kind of decisions through before you make them, okay?

I hope you can get proof of MG, if you have it. Sorry, but I'm skeptical until I "see" proof too. Obviously your neuro saw clinical evidence of MG or he wouldn't even have given you the Mestinon.

I hope you can work all this out. It's not always easy.

I hope you're doing okay, Maurice. I miss your country - I dream of it quite a bit.

Annie

[suev]

Here's my 'two cents' worth...

Like you, I try to stay active since my MG is irritating - - but not really bad compared to many here.

I was taking 30mg every 3 - 4 hours ... except on golf days..I was taking 30 mg every 60 minutes...but was still only able to get through somewhere between 9 and 14 holes!! (Golf is my hobby with hubby.)

Last week at neuro apt., we have come up with new 'plan'. They want me to try 60 mg before leaving house, and 30mg after about 2 hours of play. I tried it twice now. Once I made the 18 and once I could only get to 14. (And I was a dish rag the next day bot times!!)

I was warned not to exceed the amount of Mestinon agreed on just to get through the 18 holes - it's not like you keep taking it so that you can 'power through'. (Like Annie said - you could power your way through to the ER!!)

And neuro wants to reevaluate the plan after 4 weeks.

I guess the point is there is I feel really good about having a neuro who is trying to accomodate (within reason) the lifestyle I want to live. But I can already tell, I will be the one making concessions to the MG - not the MG surrendering to the Mestinon.

Pls 'experiment' with your new plan carefully...and perhaps not as agressively as every two hours. Whatever you do, make sure there is someone around who knows what dose your taking, frequency, and who knows what to look for if you have a mishap. Perhaps you will get more options from new neuro consult - -just be a little careful til you see him.

Sue

[Stellatum]

Annie,

Thanks. I asked because I wanted to know. Obviously, a cholinergic crisis would be more upsetting than reading some discouraging news...

I've been taking 60 mg. every three hours for the past month. After two and a half hours, my neck muscles get weak so that my head flops from side to side. I told the doctor that the Mestinon seems to take care of that problem completely, but only for two hours (it takes the drug about a half hour to kick in).

Mestinon does make some of my symptoms go away, for two hours at a time. It makes the side-to-side floppiness of my head go away. It makes my double vision go away. It makes my tiltiness (weakness in the muscles of my sides) better. It doesn't seem to help the muscles in the back of my neck and shoulders at all.

I guess the point of taking it so close together is to get rid of that hour's gap every three hours, where my side-neck muscles get weak. But my neuro told me--and I have accepted--that the Mestinon alone isn't going to do it. I am reconciled to taking an immunosuppressant if they can convince me that my diagnosis is established.

Anyway, I will think carefully about this. I will either not take it so frequently, or take the other precautions you recommend: talk to my family, and read up on signs of overdose. I'll write up a card explaining what I'm taking and why, and who my neurologist is, and that I may be having a cholinergic crisis. I'll put it near the phone (I have homeschooled teenagers). Another copy in my purse. That's a good idea anyway, don't you think?

So far, I've had tests to rule out everything else they can think of. I've had a SFEMG (borderline) and antibody tests (both AChR and MuSK: both negative) and a thymus CT-scan (negative). The tentative diagnosis of mg is based on my symptoms, and perhaps my response to Mestinon. My neuro thinks it's established enough to give me Mestinon, but not enough to give me immunosuppressants, and I think I agree. The doctor I'm going to see next is a specialist in neuromuscular disorders, so maybe he'll think of something else to test me for.

Thanks, Annie, for this and for all you do.

Abby

[AnnieB3]

Hey, Sue, I didn't know you golfed! My Mom is an avid golfer too and golfed with my Dad when he was still alive. I do have a few tips, if you don't mind, which you might already do. Make sure you stay hydrated out there. That will help cool down your body. I sure hope you are using a cart too! Bring a protein bar with you, like those Larabars that have just fruit and nuts. Snack on it every few holes, plus drinking some water. And it wouldn't hurt to have a little bit of coffee in your golf bag to sip on once and a while to up the acetylcholine! My Mom doesn't have an acetylcholine problem like I do but she does have a bit less due to older age. Have you ever had a hole in one? My Mom had her first one at age 74.

Abby, I thought you might be pushing too hard. You know, you have to rest your muscles with MG. Drugs only go so far. Even immunosuppressants. You still have to be sensible. And, yes, it's always a good idea to have medical alert cards/info everywhere you can think to put it.

I think it might be worth it to have the SFEMG redone and done in two or three muscle groups. By an expert!!!

Annie

[Stellatum]

Annie,

Oh, boy, if I rest any more, I'm going to have a cholinergic crisis just from inactivity!! I am lazy by nature, so the first things I gave up were the chores I don't like: cooking, shopping, driving. Now I go out once a week, to our homeschool co-op, which I will give up when I die, and not before. And to my doctor's appointments. Haven't washed a dish in months. My sweet husband and my swell teenagers have taken over everything else.

The specialist I'm going to see is an expert on EMGs! He's the guy who did my SFEMG and pronounced me "borderline." I hope he retests me. I hope he retests my AChR antibodies, too.

And now I feel I must be boring everyone beyond the limits of good taste, with all my troubles. I have many good things in my life, too. When I had to give up my fiddle, a mandolin dropped into my lap (almost literally), so we have our music back. It is spring, and everything is green and yellow. I hope all of you can get some warm sunshine.

Abby

[AnnieB3]

I thought of one more thing, Abby. Have you ever had your IgG's tested? They are immunoglobulins.

For example, if someone has an IgA deficiency and are tested for celiac disease but they do indeed have the disease, their antibody tests may come back negative. Those tests are IgA tests.

MG antibodies are IgG tests. So if you have a deficiency of even one of the IgG's, you could look like you don't have antibodies when you might. These are the subgroups of IgG: IgG1, IgG2, IgG3 and IgG4. Dr. Vincent found that most acetylcholine antibodies are IgG1 and IgG3.

Just a thought.

[Stellatum]

Wow, this is all new to me. I can't imagine having any sort of immunodeficiency, since I'm so resistant to germs. I never get a cold, and I'm also allergic to everything they tested me for. Besides possible MG, I have Graves', another autoimmune disease.

I see now that getting a firm diagnosis is extremely important, since I can't really be treated without one. So I hope that the new neuro will either know these subtleties or send me to someone who does. I also think I read that there's a third antibody they could test me for--ryanodine, right?

Now's the part where I patiently wait a month to get the next appointment....

I told my kids about what to do if I have a cholinergic crisis.
Kids: So how do we know whether to call an ambulance or not?!?!
Me: It's very simple: just ask me. If I can't answer, call an ambulance!

Abby

[suev]

Originally Posted by AnnieB3

Hey, Sue, I didn't know you golfed! My Mom is an avid golfer too and golfed with my Dad when he was still alive. I do have a few tips, if you don't mind, which you might already do. Make sure you stay hydrated out there. That will help cool down your body. I sure hope you are using a cart too! Bring a protein bar with you, like those Larabars that have just fruit and nuts. Snack on it every few holes, plus drinking some water. And it wouldn't hurt to have a little bit of coffee in your golf bag to sip on once and a while to up the acetylcholine! My Mom doesn't have an acetylcholine problem like I do but she does have a bit less due to older age. Have you ever had a hole in one? My Mom had her first one at age 74.


Annie

Great hints Annie!

I try to stay hydrated (easier when the temps are up a bit) but should do a better job of it on every round. And I do use a cart - and I sip on iced coffee!! ... and still can't make 18 grrrr!

Yes, I have golfed for better than 30 years. Had single digit handicap, one 'hole on one' about twenty years ago. Then had another on January 27, 2010 ...but it didn't actually count (sadly) cuz I was unable to finish 18 holes. (Actually, I was so tired at that point in the round, my first thought was that I didn't have to put!! Had to stop two holes later.)

That's when I decided neuro had to work with me on a better plan (my neuro is a golfer too and completely understood ... hehehe!)

Congrats to your Mom on her hole in one - - it really is a neat feeling!!

My hubby is retiring in just about 10 days and we had always planned to play golf every non-rainy day - -- but I'm very doubtful about my ability to pull this off now. At least I have found that if I play a few holes, skip a few, play a few more - I can last longer. But I am a bit concerned about Houston summer weather and know how careful I must be.

I miss having a handicap and being competitive - but am sincerely grateful that I'm able to do what I can do - for however long I can.

Annie, I'll add the snack - - but do you think there would be benefit in adding a highly salted snack in the hopes I would drink more...or is that too much electrolyte manipulation?

Thanks!
Sue