When I overdid it, during my pulmonary function testing, it also knocked me back to square one. I did a complete rest, no talking (my lungs are the first to go) and I let my husband do all the cooking. It took a few days to start feeling better and get talking again. The deal with my doc is that if rest does not help and I continue to feel poorly or worse, I was to go straight to the ER. Luckily for me, the rest and the mestinon worked. I now pay close attention to just how much I pace myself. Remember to listen to your body and rest when you start to feel weak and not push it. As they say, rest is an MG'ers best friend, it is up to you to find your balance between meds, activity and rest. I also found the stress of Christmas hard, and have cancelled the next few days until I am breathing easier. As for the SFEMG, you are right, they are not 100%, but as I understand it, Mestinon only works if you have MG and will do nothing if you don't. Since you have had some help from it, it stands to reason that you do have MG. I hope this helps.

If your breathing starts being effected, it's most likely time to go to the Emergency Room.

Also, it maye take some trial-and-error to find the right dosage/frequency of the Mestinon to be effective in giving you some relief from your symptoms. Work with your Neuro on this. Everybody is different, and the dosage and frequency that was providing some relief a few months ago may not be as effective now.

Don't stress about the SFEMG. When talking to your Neuro, if he/she thinks it's time, try not to put it off if you can help it. Better information "sooner" is a good thing.

You need to get some quality of life back, your babies need you.

Take Care, Keep us posted. Chris.

I would say that there's never really a good time to panic. :) There's nothing in this world that was made better through panic, right?

I'd also say that, in my case, overdoing it in the short term can lead to a long-term crash in terms of symptoms. It can take me a very, very long time to bounce back.

I also need far more mestinon now than I did when I was first diagnosed. How much mestinon are you taking? If you're on a low dosage, you may just need to ask your neurologist to up your dosage.

I cannot imagine getting by on Mestinon alone. I think you will need to go into get steroids.

Sometimes, when I overdo I have to have complete rest for days before I start to feel better. You need to feel comfortable talking to your neuro. Good luck. I have been thinking of you since your last post. I wish there was more that I could say. Take care.

Thank you all for your replies. I am taking 60mg 4x a day and my Neuro said that's the maximum dose. I know I've read about some if you taking more than that and I emailed his secretary after Disney and asked if there was anything I could do or could I temporarily increase my mestinon but she simply replied saying he felt that the exasperation in symptoms was down to me overdoing it. It's reassuring that you all experience the over exertion but I am worried that I seem to be making little progress despite doing hardly anything - but I also know that 2 young children are probable enough to wear me out without the housework and part-time job.....and the distant memory of a social life! Lol!! You are right though - it would be nice to have some life back and my babies do need me functioning better than this!!

My problem is that he is over 2hrs away so I have need effectively discharged back to my GP (I live in the UK) I completely understand why - he said he didn't want me making the long trip just to tell him I was well, so my GP can review me and if anything changes they would refer me back to him. So, I feel bad emailing him as technically I am currently not his patient? Also, I emailed to ask if I could ask my GP for a chest CT as I have persistent Costochondritis (inflammation of the chest wall) and a feeling of a lump at the base if my throat - I only had a chest X-ray at the start if my investigations but no further investigations so thought it was worth asking, but that was 10days ago and I had no reply so I feel I am making a nuisance of myself!

Thank again everyone - it's late here in the UK so I'll say goodnight but will check back in the morning and I am so grateful for any help/advice/ideas/stories that might help. I keep praying the new antibody test will be developed and help hopefully all of us seronegatives fit the last piece of the puzzle and put an end to the roulette of tests and interpretations :) x

60mg x4 , as I'm sure you will hear from others, is certainly not the max. Some of us get by only on Mestinon, perhaps for years. During that time, most of us have probably had the dose increased until we find what works.

Everybody is different ("Snowflakes") , but I am thinking that Mestinon, for those of us that it is effective and take it exclusively, will only "cut the mustard" for so long at a certain dosage, and then an increase would likely be necessary. For some, at some point after additional increases, Mestinon may not "cut the mustard" anymore at all, and additional treatments would be necessary. My understanding of the progression of the disease is that eventually the neuromuscular junctions get so "gummed-up", that even the increased dosages of the Mestinon can't make it through. This may take Months for some, Years for others. Time for other options at that point.

My Neuro is only 30 mins away, and for me that's too far. I guess I'm spoiled, but I could not imagine 2 hours. I know many of you have to drive hours, and I certainly feel for you ; I hate being in the car any more.

Are their any other Neuros closer?

Patient: Doctor, it hurts when I do this.
Doctor: Then don't do that.

Treatment should be designed to support your life, not the other way around. Sigh.

You can take more Mestinon. When I am bad, I get just minimal relief when it peaks and need to take it every 2-3 hours.

I am so sorry you are having trouble.
I would highly recommend you take 90 of mestinon around the clock every 4 hours.
My first neuro said it was too much but my expert said it was fine. I did fine on 90 every 4 hours.
To avoid a problem or severe crisis I would STOP life as you know it and go to bed. I would recommend you do anything you have to do to do that. That action could keep you out of hospital. If you were in the hospital who would care for your family? You have a chance of getting well if you do a real rest.
Take care ...as you know .....
Ann

for me
the effects of mestinon don't change.....I just get worse and need more.

I would also recommend treatment such as cellcept or prednisone as soon as you can.
Ann

My neuro continually reminds me that my 60mg 4x.day along with 180 timespan at night is no where near the top and if I'm having breathing problems to push up my dosage and if I'm having leg twitches (no diarrhea) at the top of the dose cycle just take magnesium 250 2x day and push it up any way. I'm also on cyclosporine.

At my last appointment, my neuro told me that I still had room to increase my dosage of Mestinon. I'm currently taking 75mg every 3 hrs during the day (which comes out to five times) and 1/2 timespan at bedtime.

I've had only 2 days in the last 3 years that I can honestly say I felt good. Most days are a struggle for me. I don't bounce back quickly at all. After my hospital stay earlier this month I still don't feel like I'm back to where I was and the boost that I get from mestinon isn't as good either. My mestinon didn't help me at all when I was first admitted. I was really surprised by that. I didn't expect that it would be completely useless in that situation. That's when I needed it the most... how can it fail me now???
It wasn't the mestinon that helped me get stronger. It was the prednisone. When he doubled my steroids I started to be able to urinate on my own and move my arms and legs. Even at that, it took me 2 days of the double dose of steroids to get to that point. If you are only taking mestinon I would strongly suggest that you rest COMPLETELY and find out if your PCP is comfortable with starting you on low dose prednisone until you get stronger. I also agree with others here about cellcept or the like. It definitely makes my strength more even throughout the day. It really just seems to compliment my mestinon doses. I think that sounds like a no-brainer to me. I hate that your neuro is so far from you. That really stinks but maybe the neuro would be willing to consult with your PCP to get you the best care possible without making you drive that far each time something needs to be adjusted.
It's just food for thought. I hope you start to bounce back but don't hesitate to head to the ER if your breathing becomes labored or your weakness is so profound that you can't hold yourself up. Please let us know how you are doing though. Good luck hun... hugs to you.
Angie