Thank you everyone for your input. Frankly, like most of you I want what i have always had. You know that situation where yuo feel crappy, you go to the doc. get pills, then suddenly you feel better. I suppose that is not how this is going to go for me this time around. The mestonin works, within a short time after I take it but I find myself needing it more and more which is not what i want. i mean who wants to take a pill every few hours? It just seems that there should be an easier way to combat this When i discussed this with my doctor she said it was a new diagnois and that it takes time to work out the balance of drugs. if that didnt work then we could look at other options. meanwhile i am trying to be functional in a job that i need to keep for the same reasons as everyone, $, insurance etc. How do you do keep working etc when you are so fatigued midday you kind of need a nap or at least a rest time... uggh.. thanks again for the feedback .. i guess i will need to pull up my big girl panties and trudge forward.. my best to you all..

We added Prednisone soon after I was diagnosed. It helped with my eyes but not the tiredness.

I brought a smoothie for lunch so that I could sit out side during lunch and close my eyes. My MP3 player has an alarm so I did not have to worry if I feel asleep. Then when I got home I would take a 45 min nap before doing anything.

I no longer have to rest at lunch or take a nap everyday. Since add Cellcept and it began to work.

MG although rare also has sub-categories. Not everyone has severe symptoms. I do believe that those who are doing really well may not be as inclined to reach out for the support provided here. You may see more of the involved cases due to this. I myself happen to have a very rare form of the disease. It is refractory progressive generalized MG. Meaning that to date no treatment has helped and the disease is progressing to include damaging my central nervous system. So far I am still working with a flexible schedule and I receive IVIG every other week in hopes of slowing the progression. I try to focus on all that I have had and done in my life and not on what I can no longer do....Good luck to you! Barb.

Maureen
Taking a pill every 3 to 4 hours is a treat with this disease.

To answer a few of the questions .... No other treatment other than mestonin. 1 time release plus up to two 60 mg as needed pills a day. lets just say that most days it takes more than 2 to keep me functional. the time release is new and it doesn't appear to be all that effective for me. i am thinking more of the rapid release is better. have any of you had that experience? No there is no talk of treating the underlying issue, i only realize there are other therapies from what i have read on here and online. love my doc, but no she is a neurologist not a specialist in mg. my biggest first symptom was my voice was slurred and i was treated for lyme disease, that didn't get better and then i started having trouble swallowing and about that time i got diagnosed. got my mestonin and for a few days the world was back to normal, that didn't hold for long. Now i get double vision a few times a day and my neck weakness is so uncomfortable that i am only upright for a bit before i am exhausted. I was so excited to get a diagnosis, so i could feel better and it appears that i am worse since diagnosis... i get relief, some relief but never 100% relief right after taking my meds but it wears off so fast.... why is that?

It just wears off. That is just how it works. I took up to 90 every 3 hours when I was not doing well.
We need treatment such as prednisone or
cellcept to see a real change.
Cellcept takes up to a year to work. Prednisone will work faster.
I am on both and mestinon as needed.
This is not the kind of thing that goes away over time as most of our past illnesses have. We need serious rest and we can't head downhill. It takes too long to head back up.

thanks for the input Annkemp, you seem to have a history similar to my present state. My prescription calls for one time release (180mg) once a day and up to 2 60mg per day as needed. i am taking much more than that right now, without being told to but out of necsessity. neuro doesnt need/want to see me til march. what do you think? should i call and see her sooner?

No offence to your neurologist, but you should see someone who specializes in MG. The MG could end up progressing more just on Mestinon. I have experienced that. Just taking Mestinon was enough at first for me, but after working for a month, things started to get worse. I'm not trying to scare you. Just be careful. Talk to your dr. because there are other treatment options for you. Has your dr. discussed any other treatment besides just taking mestinon?

Maureen and all other newbies,
(Sorry in advance for the long response.) :-)

Welcome to our little slice of love and support. You are now part of a very loving and caring family and I am happy that you've found us though I wish it weren't because you are ill.

It sounds to me like your Neurologist doesn't have a lot of experience with MG. It is critical that you find a specialist. I'm certain that your doctor is very good in general neurology but this is way more than the average neuro can handle. You can search for specialist in your area on the MGFA.org site. There are neurologist that have done extra education and training to care for those with MG. If your current neurologist believes that mestinon alone will get you back to "good as new" then I promise you, your treatment needs will not be properly met.

Many of us is on multiple treatments. Mestinon does NOT treat MG. It treats the symptoms of the disease ONLY!!! Without any treatment for the underlying disease, it will progress. It is a progressive disease, so not treating it is dangerous.

Hopefully you won't have to have as much treatment as many of us and I am not here to scare you or make you uneasy about your care. I just want you to be informed and proactive. You need to advocate for yourself.

Please do some research on other doctors in your area and treatment options. If you are unable to find a specialist then you may be able to talk your neuro in to starting prednisone (faster acting) and either cellcept or imuran (slower acting). Many times patients are started on prednisone and one of the slower acting meds. The prednisone gets you more functional while you are building up the other medications in your system. Once you are at a good level (which takes a MINIMUM of 6 months to reach a therapeutic level) you may be able to wean you off of the prednisone. We have a love/hate relationship with prednisone because of the side effects but for some of us it is absolutely necessary.

Now about the mestinon. The time release mestinon is not right for everyone. Some neuro docs don't think it is effective enough and therefor won't prescribe it. Other neuro docs swear by it. Regular old mestinon is the most effective for most people. The only way to know if something will work, is to try them.

Don't be afraid to ask your neuro how much experience she has with MG. If she has no experience with it find out if there is a specialist that she can consult with to learn more about it. In my opinion, she should be seeing you once a month until you are feeling more comfortable with the treatment(s). You should also be seeing your primary doctor pretty regularly and keeping them informed of your situation. You might also want to print some information for your PCP to get them up to speed with your MG needs. Especially to make them aware of what medications you can take and what you can't take.

Now on a more personal note, learn your physical limitations early. That will be the most helpful thing you can do to help yourself. Most of us are "go getters" and workaholics by nature. Because of that we push ourselves so hard and so far that it takes forever to recover. Learn what you can live with and what you can live without. You will find that life has to be more simple than you are use to. That isn't a bad thing, it's just different. Be thankful for the things that you do have. We are all very special in what we experience on a daily basis. No one can know what you are going through because others don't see it. They won't see it until you are at your absolute worst. Even then, they may not recognize it for what it is but try to remember that they mean well. If you need the wisdom of those who have been where you are just come to DS.

Hi again Maureen , Angie did her usuall excellant job of explaining MG . She is a true professional . I would add that the MGA association is on the web site and has listings of docs who are schooled on MG. It is a rare one with very few ever diagnosed with it and as such there is not enough call for higher education in MG as say MD or MD , etc. Also MGA has Chapters all over who you can call and talk to about finding Docs and they offer a booklet that you can give to your Doc if needed for about 12 dollars that will be a great help in treating MG . Most of us in here have had to go to two or three differant Neuros to find one who really had knowledge of how to treat Myasthenia Gravis . The hunt for the right Doc can be frustrating , but when you find them sending a thank you card to them does wonders for your treatment , Good luck and get all the rest you can , Charlie

Hi

I am new as well, Oct 13, and like you I was scared and overwhelmed. I am on Mestinon 60mg three times a day and just started Timespan at night and have shown improvement unless I get stressed... I am on the stress management learning curve at the moment and have learnt very quickly how your condition can fluctuate when stress levels rise. I am about to start IVIG which I understand gets rid of the antibodies for a short period. If you have any questions about that feel free to message me as your questions are probably those running through my head.

Also I posted something similar not long ago as I was overwhelmed with by the facts and have had many emails from people who have MG and are now living relatively 'normal' lives which has given me great hope. I think it is important an instrument against depression to let your mind hope for the best. Of course, take in all the knowledge people offer here so you can be assured that you recognize new symptoms and problems. But hope at it's very least can keep stress at bay.

Xx

Thank you everyone for your responses. I have contacted my doctor yet again and we will see what she suggests. I guess I had hoped to be able to keep up my pace of life or adjust it down ever so slightly to accomodate this diagnosis. Clearly that is not the case. I was led to believe, or perhaps it was wishful thinking on my part, that this could be controlled relatively easily, That is turning out to not be the case. I think it is wise to ask "how many other patients" my doctor has treated and get an idea of her background with this disease, she has told me several times how lucky i am to NOT have MS that its almost her mantra (things could be worse kind of thing) . I think i need to use my own vocal skills and get her focused on whats going on. We patients get to a point where we are difficult, and i guess that is ok. I have a family a career and a whole lot of things i want/need to do, there has got to be some hope of feeling better.. (how naive and new to this does that make me sound?) Im sure you have all been where i am and I appreciate your input. I will be taking much of your advise and pushing for treatment vs. symptom management and we will see what happens THANK YOU THANK YOU THANK YOU

This is so so so difficult.
I have had it for over 3 years and for the first time in my life I am jealous of others. Those who run and can lift.
But as I say that I sit her grateful I was able to drive to see my granddaughter. There was a day I wouldn't have been able to do that
You take care

Hi, Maureen! Glad to have you here with us. :)

I've been diagnosed for about a year now. I've held off on
the immunosuppressants because Mestinon has been enough
for me so far. Am I still wiped out easily and do I have bad days? Yes.
I haven't had a crisis, but that would lead me to go with something other than mestinon.

You have to do what works for YOU!

Carly

i did start the dreaded pred when i had to sit and hold my head from neack weakness,voice-i sounded like a 2 pk aday smoker-pred works for me without bad effects except the fat chipmunk face. i've learned to live with it. are there any neuro opth docs in area? large teaching hospital nearby? they might be able to navigate your journey to your satisfaction- but who knows- you may have to shop around but it's for your life so it's nec. speaking of shoppingdon't be afraid to ask for help if you shop-i many times ask for grocery person to load my car for me. have always been accomadated nicely and they always refuse a tip!