Welcome to the group. Some of us are good as new. I know I am so much better since diagnosis. Some are not. It's an individual things.

A lot of people in the group would kill to find a good sympathetic doctor. It sounds like you have one.

We are all different. Your doc is most likely looking at your current symptoms and believing mestinon will get you on track. Hopefully that is the case.
Some of us get worse and then better after that. We never know for sure how we are going to progress.
Remember those of us who are home more come to this site. I do believe it to be true that many working may not.
take care and welcome
Ann

Hi Maureen,
Welcome to the group. Some people do continue having a lot of weakness and end up struggling after being diagnosed, but many people do improve too. This disease seems to affect different people really differently. Usually, more than just Mestinon is needed though: Mestinon just temporarily makes the symptoms go away, but an immune suppressant like Prednisone or Imuran is what really gets to the root of the problem. Are you taking one of those drugs?

I was really really weak about a year ago, and was hospitalized twice for crisis, and had to take about 9 months off of work. Now I'm able to work more or less full-time, and sometimes go running and can run errands, carry groceries, etc. My life isn't the same as it was before; I do have to monitor myself really closely and be careful what I do, but I am doing a lot better than I was.

Keep in mind, and there have been recent discussion on this board on this topic: most of the people on this site are ones who aren't doing as well; many people who have improved don't need a support group any more and have stopped checking in. So the stories you read on here probably aren't a general overview of the disease itself; there are many people who have been able to return to a more normal life that you'll never hear from on this site. :)

Hi, and welcome! Speaking from my own experience, for several years after my diagnosis, I did well on mestinon alone, and lived a pretty normal life. Things changed a lot for me last year, and I've had to scale back my work and activities, but I've also adjusted my treatment plan and feel like I'm stabilizing somewhat. It's helps to look at this as a balancing act between your treatment and your coping with symptoms.

Welcome Maureen!

I just want to echo - what everyone is saying. Each of us - has a very individual experience with MG. That's why MG - is called the ''Snowflake'' disease. No two cases - are alike.

Many people - hardly ever post here: they are doing very well.
Others are here, seeking help - because they are so sick.

Don't be scared, by those of us - who are going through a hard time.
Take courage, from those of us - who are doing well.

Make sure your Neurologist - has good experience with MG.
(Sees MG patients weekly, with many good outcomes.)
- Ross (in Maine)

I also am feeling overwhelmed.
I have suffered a long time not knowing what I have.
My symptoms fluctuate widely. I just heard about MG last year.
I am trying to get a diagnosis. I am very confused about the disease.
I have one borderline low actelycholine recptor blood test. I have acute muscle weakness. Breathing issues (mid restrictive lung disorder) I have severe but highly variable vertical eye imbalance.
But never a droopy eyelid. My muslcels definitely fatigue on repetitive use. I also have thyroid issues and a sister with similar symptoms.I also suffer from terrible anxiety but not psychological it is from the unexpected fatigue/weakness.
And My family and friends and doctors always say I look so good I cant be sick?
As a result I have now been socially isolated because they don't see my invisible disability.
I have spent 20+ years searching fighting and coping and spending $$$ of dollars on treatments..It has been a silent battle to just keep my head a float.
I admire all of you to battle and remain optimistic with yr personal struggles.MG and other conditions like it are a daily struggle.
Know You are not alone MaurenNY.

Welcome Maureen. Glad you found this group.
Ditto to all of the above. Fingers crossed with mestinon alone you will be better. We are all different. Usually there are some lifestyle changes, depending on the severity of your weakness. My weakness can vary daily, depending on activity and stress.
Hugs,
Sherry

Welcome, Maureen. I would echo previous replies, in particular about seeing a doctor who specializes in MG. Are you, or are you seeing a general neurologist?

Hope

Welcome Maureen,
You are officially a flake. That's not a bad thing...some of my best friends are flakes! We all have one thing in common...MG. How it effects us and what treatments work vary. I was diagnosed almost 2 1/2 years ago and I've had my ups and downs. The first year of diagnosis I was unable to work (I teach), but I am happy to say this is my second school year back to work. Please make sure you have a neurologist who is familiar with MG. He/she will help you find the best fit for treatment. We are here for you and welcome to the family...

I amazes me every day how people here embrace new members.
I think it is because we know how challenging this is and really want to support anyone who is in beginning or really in any stage of the disease.
We truly want to do anything we can to makes someone's journey better.

Hi Maureen -- and welcome . Everyone has said it all , each of us are differant in how MG effects us , but we are a family in here , Charlie

this is just a new chapter in your life. some people are speed readers,some read many chapters in 1 sitting and others read slowly but just as throughly. best advice is what has been said -ask questions-the only dumb question is the one you don't ask even if its the 7 th time. don't let a dr make you feel intimated or rushed. make a calendar to keep track of meds and reactions good or bad, any other illnesses big or small, weakness eye issues or whatever and bring with you to dr with ?s. we all tend to get to dr and say i'm not really bad when 3 days ago you could barely do what you did today. welcome and i hope you find all the positive things here i have

Maureen. Some of our doctors are naive to think mestinon is some kind of cure. While it is true that you may not progress and can stay on mestinon and hope for remission, you must pay attention to your symptoms. Do you have to take more mestinon to accomplish what you had previously? Watch yourself and if you need more mestinon over time to feel better, you need treatment. I tried for almost four months on mestinon only and just got worse. IVIG will give you relief for a month also. I did for me as I waited for Cellcept to kick in.

Remember that Mestinon is not a treatment per se. Mestinon treats the symptoms of MG like aspirin treats a headache. If you have chronic and/or more sever headaches, aspirin would not do any longer.

Welcome to the family, Maureen. The folks here at DS will help you out so much. Just hang in there. One thing I have learned is that MG takes patience. I was diagnosed in August 2013, and by October, I was so overwhelmed with what was happening, I thought I was finished. The first step I took was joining DS, and learning as much as I can about MG. My doctors take care of the meds. It's been almost 6 months, and I am doing very well, and returning to work in 2 weeks. Stay positive and strong.
Tim

Welcome Maureen! Although sorry for the reason you are here.

I was dx September 2012. My treatment consisted of Imuran, prednisone and mestinon. I went back to work shortly after treatment started. I have generalized MG with good days and bad days. My need of mestinon varies day by day. The other meds I take are to work on the cause of the disease while mestinon helps the symptoms. I would be concerned if your doc is only treating your MG with mestinon. I have read here where some people get worse by their cause of the disease not being treated.

It is overwhelming to find out that you have a disabling disease. Stay close to this group. Hug! Barbel