Okay, long story short, I've been having muscle weakness consistently for almost 4 months now, had it off and on for the last 2 years. Trouble chewing, lifting arms to wash hair, brush hair, teeth, do my makeup, even holding my neck up sometimes, sitting up at times, going up stairs, activities in general at the end of the day when I am excessively fatigued, etc. Also a lot of shortness of breath, lately it's been terrible--to the point my chest just aches. Diplopia--for about 2 months my left eyelid drooped a bit, not too bad, but enough I could notice, still does rarely now and then. My PCP did an MG blood test that came back negative, the neuro she referred me to suggested maybe it would be MG, but with a negative test (and he wouldn't run the MuSK test) it was unlikely, though suggested a trial of Mestinon to rule it out. He has me on 60 mg 4x a day--from everything I read, is that a lot? It just seems like such a high dose from everything I've seen. And how quickly would I 'feel' better, genuinely, if it was going to work and if I had the MG? I started today, have done 3 doses and I have noticed a couple routine things that normally are terrors for me to do are easier, even a general lifting, easier feeling of moving in general and esp. my breathing feels easier; though at the same time, not everything is easier, and at times i almost feel a little weaker? (though I read that perhaps if a person is on too much that may cause extra weakness?) Though, that weakness feels different than this weakness I have been putting up with for so long in my jaw and arms and knees and everything else, feels more like a veil over me in general, kind of odd...
SO...I am just confused as to how exactly to recognize what a successful trial will feel like, what counts as enough to be working (and not just me being hopeful ona good day)? And does the Mestinon build up over time as you take it, do you gradually see more and more results over time as you take it and feel more and more effects over time or is what I would feel this week be the extent of how that would feel? I would assume it would help. I just don't know much about this stuff and my neuro wasn't overly helpful as he seemed very skeptical of me having this. I also have Graves' Disease and seronegative Rheumatoid Arthritis, and interstitial cystitis.
Any help or suggestions would be greatly appreciated! I am so lost and confused.

This is very similar to my own situation. All my tests came back negative. My neuro tried Mestinon. The initial dose was 30mg every 4 hours. Within an hour of the first dose there was a remarkable improvement in my walking and my tendency to strangle on saliva or liquids disappeared almost entirely. I am now on 60mg every 4 hours and sometimes I take an extra tablet in between doses if I am going to be more active than usual. These "extra" tablets are done WITH my doctor's permission and not on a routine basis. I would definitely not advise you to try anything like that without consulting with your doctor first.

From what I have gathered on this forum and from other sites on the internet 60mg every four hours is a pretty "standard" dose.

Mestinon does not "build up" in your system. Its effects only last a couple of hours, thus the frequent doses.

If Mestinon is working for you I don't think there will be any doubt. It isn't a cure though. It sounds to me from what you say that there is a definite improvement for you! Good luck!

Sorry you are going through this. Your symptoms sound just like mine and more or less what is typical with MG. I am seronegative too. I was diagnosed by a single fiber EMG. I have a couple recommendations for you:
1. Go see a neuromuscular specialist at a large teaching hospital that specializes in MG or diseases of the neuromuscular junction. MG is very rare and most neuros have never seen it. Going to a teaching hospital where they see it all the time is very important especially if you are not the typical presentation like me in being sero-negative.
2. Statistics show that only 85% of MGer EVER show positive antibodies. And new MG patients may be seronegative at first and then turn positive later. You don't want to have to wait months or years for treatment waiting for the antibodies to be positive.
3. There are several different antibodies to the neuromuscular junction. ACH antibodies is the most prevalant-the commercial blood test done. Musk is probably the next highest. But there are others that have been identified in research that they do not even have commercial tests for.
4. The single fiber EMG is the definitvie diagnostic test for MG no matter which antibody you have. This test can only be performed and interpreted by very experienced neurologist that you will find at a large teaching hospital.

Your Mestinon dose is pretty standard. I take 60 mg 4 times a day and 180mg slow release at night. I am also being weaned off high dose pregnisone. Mestinon only temporarily relieves symptoms. It has a short effective duration, it does not build up in your symptoms and you will not see any cumulative long term build up effect from it. Everyones dose is different, some MGers take smaller dose more often, some are on a much higher dose than me. Here is what I experience from mestinon. It take about one half hour to feel any effect, then I notice how much clearer my vision is, it is easier to breathe and my muscle have more stamina. It is in full effect from 1 hr after dose to 3-3.5 hours after dose. Then I feel a very drastic weakening for the last .5 to 1 hr before I can take my next dose. Mestinon only temporarily relieves symptoms, it does not get to the root of the problem-antibodies. Most MGers use mestinon and another type of treatment to suppress antibodies such as pregnisone, cellcept, IVIG, plasmapharesis, etc.. It takes a long time to find the right combination that works because each person's MG is so different. I have been on meds for over 6 month and my MG is still not under control. I am trying IVIG shortly.

I hope I have not given you too much info too soon. But MG is a life altering diagnosis and I always felt better with more info so I can make the right decision. Let me know if I can be of any more help.

Good Luck,
kathie

Thank you both so much for your replies! And Kathie, I can definitely NEVER have TOO much information!! THANK you! I now have a good understanding of the overall concept of Mestinon. Your help and the information I have gathered on the net has been more than my neuro gave me. I am not sure how experienced he really is with MG. I am concerned because he said if I did well on the Mestinon that we would continue it for 8 weeks and then I would follow up with him. I feel like he is just giving me a dx and then a pill and no more info or anything and letting me wait another 2 months for additional care or info. I guess he assumes I will do my own research and get help from others..... Seems kind of lacking in assistance to me. It frustrates me.
Anyway... Day 3 now and the first 2 days I want to say I have noticed some good improvements in my jaw when chewing, and arms when doing most things that can often give that burning pain really quickly. I still have knee and leg weakness up the stairs but it doesnt seem to last as long and be quite as intense. It has definitely helped my shortness of breath immensely. Day 3, today, this morning off the bat I noticed I felt a little extra weak after I took the initial dose--had a real long restful sleep, so maybe I just didn't need the whole 60mg? I also had some real icky stomack reactions throughout the day today--felt find the previous days. That was another thing my neuro had said--that with the Mestinon you may have GI problems but with time they will go away. Is that true or is he confused? It's been a really rough day and I haven't felt really great overall today, a little help maybe from the pill, but it has been so terribly rainy and awful here, I wonder if maybe it's just not going to do much on some days?
I wonder if I continue to feel confident it IS helping (I keep worrying I'm just having the 'placebo' effect) and he dx's me if I should, as you said Kathie, just try and immediately switch over and get into a more experienced doctor (we have a Mayo clinic about an hour away I go to for my RA, maybe I will try and get my referral from my PCP to there for my MG too being Mayo is the best).

Here is a good link for MG and swallowing:
http://www.youtube.com/watch?v=VolCFZre4Ys.

Here is a couple of of good informational links on managing with MG and symptoms and treatments:

http://myasthenia.org/LivingwithMG/I...Materials.aspx.
http://www.myasthenia.org.au/html/background.htm.
http://mda.org/disease/myasthenia-gravis.
http://www.mayoclinic.com/health/mya...gravis/DS00375.

I schedule my day around my mestinon doses. I take a snack 1 hr before meals with my mestinon so I am strong enough to chew and swallow my meals. I take my last dose an hour before I head up the stairs at night and schedule most of my activiteis an hour after mestinon when I am strongest. Mestinon makes me feel better but it does not allow me to do more. If I start trying to do things like before MG, I end up paying for it 24-48 hours later with extreme weakness. You need to take it easy and rest until you get your MG stable. Taking a snack with mestinon helps the GI problems. I cut the nausea by snacking on ginger cookies. I take the pill with yogurt, it seems to help. If you do get diarrhea, a lot of MGers use Immodium.

Also be very careful of the summer heat, it makes MG much worse. Stay out of the heat and sun. I have already had the air conditioner on for weeks. Take lukewarm showers. I fold the laundry after it has cooled. I do not stand and cook over the hot stove and I make my daughter do the dishes in the hot soapy water. My muscles ache terribly. When they get bad I put ice packs on them. It dulls the pain and makes them stronger. Nerves communicate better to the muscle when they are cold. Humidity seems to intensify symptoms too. I keep the air conditioner running low just to keep the humidity out of the house. I turn the air conditioner to 72 at night. If i can get cool enough I can breathe and sleep easier and I can function better the next day.

THyroid problems run with MG. I have Hasimotos hypothyroidism. Is your Graves disease under control? Often getting the thyroid under control helps the MG. There are still regulating my synthroid so I am battling both autoimmune diseases at once and they make each other worse.

Just let me know if I can be of further help.
Good Luck and try not to stress. MG is manageable, but it does take time to get to that level.
kathie

Noticeable improvement in your jaw muscles doesn't sound like the placebo effect to me.

I also had some gastric side effects but they went away in about a week and I haven't been bothered by them since.

I'm an older man and I can tell you one thing I have learned by long experience: if you feel your doctor is rushing through your visit and just handing out pills it's time for a new doctor. Don't walk, run and find you a doctor who will listen and take the time to educate you. On the other hand, your primary caregiver is you! This is a manageable disease like diabetes, but it requires us to educate ourselves, follow our treatment, and just do the best we possibly can. You and a good doctor have to be partners in your treatment. If your present neuro isn't willing there are others around who are!

I had been wondering for months now why the heat has been so hard on me recently--I thought it was from having my thyroidectomy and just now preferring cooler temps--I USED to LOVE the heat, being from CA and now living in MN, but now if it's above 70 and even remotely humid, I feel like I just might faint! About 2 years ago, I had a spell one day where my husband and I took our son to a fair and I literally felt like I was going to pass out the entire time because I could barely stay upright, so weak and wobbly from the heat, when it wasn't even really very hot at all...and I used to be so heat tolerant!

That was a very weird time for me and I will never forget that feeling, and then last year I had a hard time with heat too, but this year, already, I feel ten times worse and not just outside, but in a hot car, definitely in the shower--I try to limit them because they make me feel terrible. I used to cherish my baths for my arthritis and now I feel near sick after them. Also the dishes, too! And laundry! Just crazy! That definitely explains all of that now though, jeez. I get horrible muscle aches also--is that MG related??
I wondered if that could be, since the muscles must be stressed with the MG? Since it's been flaring for the longest time yet now, and this awful weather, I was curious if that aided in my aches. I have terrible joint pain with my RA in this weather, but never had muscle pains quite like this until recently, and haven't been doing anything overly crazy.
My GD has been basically controlled via total thyroidectomy, and now I am on Synthroid. Recently I had been going hypo again and we thought that was maybe the root of my weakness, but after adjusting me, months later, the weakness never wavered, BUT I am wondering if that is what kickstarted it into motion again?
I did get some immodium today so hopefully that will nip that issue in the bud. I noticed the Mestinon seems to perk up my energy and takes that edge of the general malaise feeling. I don't feel so generally rotten all the time when I take it.
I had also had a period a few months ago where I a kind of laryngitis that lasted over a month where I had to strain and force my voice, where it felt like it cramped and weakend after I talked too long...saw my ENT and he said I had paresis on one side of my vocal chords but we never found out why, never made a follow up as eventually it just went away... Is that typical in MG? I think back now to some odd symptoms I've had since this started and a lot of it is making sense now...

Your symptoms sound familiar to me. I have Lems and the muscle aches are a big part of my problems along with the MG like symptoms. I tested negative for Lems the first time, but when I was in the ICU they tested me again for Lems and it was positive. I also respond well to mestinon, which confused doctors because I also had only mildly abnormal EMG.
I blamed a lot of my symptoms on thyroid, because I also had a total thyroidectomy in 2008. My thyroid levels have been either hypo or hyper, but they definitely affect whatever myasthenia you may have. I find that Armour natural thyroid works 1000% better for me. Synthroid makes the TSH come into normal range, but free T3 levels are still low, so I feel lousy.
Hope you can get things figured out.

You read a lot on the MG sites and they say MG does not cause pain. I guess the antibodies themselves aren't painful but when your muscles won't work and you keep pushing your body to get them to work, it is very painful. I have found recent articles that the MG antibodies release cytokines that produce inflammation and inflammation is painful. Here is a link about MG and pain. http://www.newswise.com/articles/pai...-2vLA.facebook. I use ice and ibuproben to get through. I know some MGers that use stronger meds.

You are in the same situation with me that you are HYPOthyroid and trying to adjust both MG and Thyroid meds to get to the right therapeutic level. MG and hypothyroid aggrevate each other with them both causing weakness. Make sure they keep checking your thyroid levels to get it under control. I feel like the thyroid issue sort of set me up for MG. A lot of MGers have a history of thyroid problems. And then the stress of abdominal surgery put me in full MG a couple of years ago. Surgery, emotional stress and viral illness are often triggers for MG.

The voice, chewing and swallowing issues are typical with MG. My voice goes horse if I talk loud or long and then I get shortness of breath. Be careful not to do to much. Sometimes taxing one muscle group will set off weakness in an entire different muscle group. Getting stressed emotional (good or Bad) can set off the MG too. Arguing with my teenage daughter sets off my MG so fast.

MG is a hard diagnosis to take. It makes you re-evaluate everything in your life and re-prioritize. Let me know if I can be of anymore help.
kathie