Hi everyone, I posted here this past summer. I'll try to link to that thread, so I wont have to repeat everything.
http://neurotalk.psychcentral.com/thread125873.html

So, here's an update. I am still waiting to see the neuro, but in the meantime I started with a new PCP. This doctor is amazing! I told him all of my symptoms droopy eyelids, difficulty with repititive task, difficulty writing, difficulty chewing, weakness in arms and legs, and at times a feeling as if I'm completely out of energy. During these times I have a hard time talking or breathing. Usually if I rest I'm ok.

So, he said I'm positive you have MG. Even if your blood tests come back negavitve I want you to take it. I think one of them was borderline at one time. He said that sometimes the levels can fluxuate. I have had a complete work up for everything else.

After I saw my eye doctor in the summer I called my current neuro who is three hours away (the reason I'm trying to find a local one to work with me). I asked her about what she thought about the trial of Mestinon and she said I should do it.

I guess I'm worried that when I see my new neuro that he will say I don't have it. I've fought so hard to get a diagnosis and some treatment. Of course I don't want the wrong diagnosis. I'm guessing that if I'm still repsonding well to the Mestinon he will keep me on it.

I'm going to try and attach a pic of my before and after taking Mestinon pics. Excuse the grey hair and old lady look. It was just a few days after Halloween afterall.

I do think my eyes looked better and my breathing was better too. The doctor wants me to take 60 mg three times a day, but I'm sort of ramping it up myself as I'm a worrier about meds since I've had allergic reactions in the past. I'm taking 30 mg twice day for a few days then I'll go up. Is it possible that that amount could help me, or do most people need more?

Thanks.

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You and I could almost be 'twins' with the before and after pix - my eyes aren't quite as closed but the corners of my mouth are way, way lower! My hubby calls me frowny face when I need a pill!!

Anyway, I am 'freaky' about meds too and started out with 15 mg 3x per day instead of the 30mg 3x they wanted me on. That was about 16 months ago, and now I take 30 mg 3x daily at a minimum. Some days I take either extra doses (if it's a 'long' day) or higher doses (if I'm trying to golf or work in the garden when it's hot).

I have worked with my neuro and have permission to alter my doses appropriately for what I am feeling versus my activity level - - however, I was given limits on maximum amounts within a four hour timeframe. There are many times when I simply have to quit what I'm doing because I can't take more Mestinon - - but I can't get my muscles to function either!! (I truly hate it when that happens!!)

Listen to your body and work with your neuro - - together you'll figure out what works best for you.

I can definately see a difference in the before and after picture. It seems to be beneficial.

A similar thing happens to me, both sides get droppy, but my left side gets way dropper...my mom calls it my stroke face...LOL...I think I look more like a Pacaso painting.

Don't worry about taking Mestinon. Work with your neuro to determine the right dosage, you'll definately know when you've reached the right dose because if you surpass what your body needs, then you'll get weak again. So that's your queue you're one dose too high.

I take 180 mg 4x's per day and experience no side effects. Of course, dosage is specific to each individual so don't try that much! It took about a year for us to work up to the correct dosage.

I am glad you are seeing improvements.

Not to budge in here but why did it take the year to work up to 180mg? Maybe what I mean is what did you experience? I guess this is relevant certainly. Different neuros that I have interacted with feel differently about mestinon. Oh and their staff. I am up to 15-25mg doses when I was barely able to tolerate 5mg even tho I needed alot more 5 months ago. I am so grateful my body is handling it better. I am not sure why. Did you body get used to the higher doses?
Annie59

It took a year because I take it 4 x's a day and was only allowed to update one time per day a month. And I could not increase around my period because that causes a false reaction.

For instance:
I started out taking 30 mg 3 x's a day. then it became 4 times a day. then it was 60 mg once a day and still 30 mg the other 3x's in the day. so to get all 4 doses at 180mg took a while. he wanted to wait at least 3 weeks inbetween increase to see how my would handle it. one time i increased too fast, so i had to decrease. then i started working and needed more and then was able to proceed with increasing.

i'm not sure if that make sense, but i hope it does. basically, my neuro just wanted to take it really slow because, as you know, having too much can also cause weakness and he wanted to make sure i wasn't taking too much and causing weakness.

For the first year I was blessed with an awesome job and boss who let me work from home. And that made making these adjustments much easier because my energy output was consistent every day. Now I am doing contract work and have to go into the office and it is a very big strain even at the high dose.

Sorry it's taken me so long to get back here. I really appreciate all of your input.

Sue~So, can you really see the difference in my pic? I have noticed the one side of my facing drooping more this past year, but I wasn't sure if I was just aging crooked. I'm going to cut back to 15 mg of Mestinon. I was taking 30 mg twice a day (the dr wants me at 60 mg 3X a day!) I think I was doing ok with that amount, but last night I had a weird reaction after taking it and I'm not sure if it was due to the Mestinon or just a coincidence. I sort of had a spell of anxiety. It was sort of scary.

Thanks!

Stroke face? That's funny because when I first noticed it I thought maybe I'd had a mini stroke or Bell's Palsey. It reall did freak me out a bit. But I guess it is just weak muscles in the face. Picaso? LOL True. It does look as if I'll have to adjust my doseage somewhat.

Thanks for your reply!

OK, so I have a few more questions if you all don't mind. How do you tell if the Mestinon is working if you don't have daily symptoms? I suppose I could push myself and then see how I feel. Also, I had taken 30 mg twice a day for two full days without any real problems. Last night after I took my pill I felt really weird. I hadn't ate a real meal in about five hours and I'd had a candy bar about an hour or two before. I know I should have ate something when I took the pill. Anyway, I ended up getting panicky I have had panic attacks before, so I suppose that it could be what was going on, but the Lexapro I'm on usually blocks those.

I don't want to stop taking it when whatever happened might not have even been caused by the medication. I could have just had low blood sugar. The weird feelings passed within a few hours. So what would you do? Would you keep taking it? I did take only 15 mg earlier today and am getting ready to take 15 more now. Also, is the Mestinon something you can take before you exert yourself or can it work after the fact?

Thanks a bunch!

A few things to know about Mestinon...

it effectively lasts about 4 hours - - so if you are taking it twice a day - you are probably 'running on empty' for some hours of the day

it's absolutely best to take it with some food - candy bars don't really qualify, the sugar alone could make anyone anxious

For reasons that I do not know, I was pretty sensitive to Mestinon in the beginning and could 'feel it' kick in...and I was kind of anxious about what I was feeling. After almost 18 months of taking it, I rarely get that feeling anymore even though I now take higher doses

As far as how do you know if it's working? Mostly I know when it isn't - not when it is. If I need more (like when it is getting close to time to take it) - I'm still functioning fine. I'm just exerting more will power to do whatever I'm doing! I could keep going without it - but by the end of the day I would be droopy and tired...and I would be concentrating and using two hands to get the gallon of milk out of fridge - instead of just grabbing the milk!!

Shalynn, It is scary taking a new med but the way your doctor has you doing it is sensible. You can always increase either the dose amount or frequency later, once you and your doctor are certain it is working. You certainly do not want to have an overdose of it and get weaker.

Do your panic attacks have a pattern? Have you spoken to someone about them? If they can get worse at night, it may have been a panic attack. My psychologist explained a very simple thing about panic attacks and the body that may help you. Fear and anger cannot coexist in the body. Fear is what can bring on a panic attack in many people and actually getting angry, among other things, can help you get out of one.

A drop in glucose can actually trigger a panic attack! Quit putting off eating!!!

At the doses you are taking, you should not be afraid of a reaction!

No one is the same with Mestinon and everyone should work with their doctor to figure out the optimum dose amount and frequency. More is not always better.

Sue, I hate to contradict you but I'm going to! Mestinon kicks in after about 1/2 hour to 1 hour. It lasts for about two hours after that and then either decreases in strength or stops being effective. Some people take it only when they need it and some people can take high doses every two hours. DO NOT change anything about taking Mestinon without speaking to your neuro though. I take Mestinon every three hours at 90 - 100 mg. I know when I need to decrease or increase. It takes some time to get used to the drug and listening to your body really helps.

Do you mind a suggestion on the photos? I have a Masters in design and have taken quite a few photos in my life, including photo shoots. If you can, try to take the photos so that you are looking straight forward. They look a bit like you are looking down. Take the photos in the same exact place with the same exact lighting. If you take the "before" with natural light, then take the "after" with the same lighting. Keep the camera the same distance away from your face. If you can set it on an object that is directly in front of your face and set it for the timing mode, you will get more accurate photos. Due to the lighting, color and angle changes, it's harder to tell if your face is better/worse. It does look like there is a difference. You want to not only capture the eyelids and eyebrows but the entire face. My nose actually droops a significant amount, which is entirely gross.

What did you have to eat for dinner? Not to be nosy but to see if it's anything that would affect MG.

How can you tell if Mestinon is working? Well, if you have ptosis on a consistent basis, that's one way. Look at your face before taking it and then one hour after taking it. If you see a difference, it's working. Whether it "works" or not depends upon a lot of factors. If you do a lot during the day, it can be like drinking water and have no obvious effect on MG, even though it probably is. Mestinon is a "helper" drug. If you do too much, your MG will get even worse no matter what. There are people like me who do better on a consistent dosing schedule but others who can take it when they clean or run errands, etc.

Having someone around when you take it or talking to someone on the phone might help. Anything that reassures you. I'm being serious. Panic attacks are not fun. If you haven't spoken to a professional about how to deal with them, other than taking a drug, you are doing yourself a disservice. There are many coping skills for handling them! And, sometimes, a physical condition (even a drug) like high blood pressure can increase panic attacks. So it's always good to check with your doctor about all of this.

Hang in there. I hope you can get some solid answer soon.

Annie