Hi Kathy
 

Welcome to this forum. I can only reiterate what others have said!

MG is a learning curve and you will adapt your life around it. Along the way you will find out what you need to adapt to make life easier. Reading through previous posts.....when you have the time and energy is a great way of finding out little hints and tips to help you make it through the day!

This forum is a great place to express your hopes, fears and frustrations and no one will judge you! Because we all have insight into what its like.

They are a great bunch here, welcome onboard!

Love
Rach:grouphug:

Kathy, Welcome. You've gotten some great responses. People here are very supportive.

It's great you got a diagnosis so quickly. For a lot of other people it can take months to years.

I'm sure your neurologist thought it was necessary to start you on Pred. I'm afraid I'm going to be really brutal on it right now. So many doctors do not discuss with their patients ALL of the issues with Pred. Kind of ticks me off since I know people who are seriously suffering from the effects and not being able to get off of it.

Prednisone is not the only drug you can have for MG to help reduce the immune process that is attacking your body. Prednisone is often given every other day, either right away or after a week or two on it. When you take it, you should be taking calcium and vitamin D since Pred can make your bones more brittle (sucks out the calcium). You should also be on an omega 3 supplement. Pred is an antiprostaglandin and you need good prostagandins in your body to fight inflammation, infection, etc. And to keep the gel coating of your stomach intact.

Getting off of Prednisone is really hard. Prednisone basically tells your adrenal glands to take a vacation. And going off of Prednisone means your adrenal glands have got to go back to work. They don't like to do that! You can have an adrenal crisis when trying to go off of it.

Pred also can cause diabetes. Diabetes can cause increased problems with circulation, sores, infections that don't heal (as can the Pred). There are other problems like glaucoma that your doctor should have talked to you about. It should all be in the prescribing info of Pred, but not a lot of patients read their drug info!!!

While your eyelid area may only be involved now, chances are you will have generalized MG. Sorry, but that's how it usually goes. So please take it easy, especially in the heat. Heat makes MG much worse. So does stress, lack of sleep, infections, etc. Anything that stresses out the immune system will make MG worse.

It's good you didn't go on that vacation. Being away from medical care before you have meds might've been dangerous.

Please ask your doctor lots of questions about drugs especially. They are not benign and only you can make a decision - an informed decision - about what to do.

Good luck with figuring all this out. It's a huge learning curve. I hope you only have ocular MG.

Annie

Hi Kathy, Im youre age and was recently diagnosed, and your case sounds exactly like mine. Same exact symptoms, same way, driving somewhere, blurry, then droppy eye lid, double vision, from eye doctor to neuro opth, to neurologist, but I refused any steroids, and so far Ive been lucky on just mestinon, I was taking one tablet am, 1/2 a tablet later one, and 1/2 by the evening, three times a day.
Now I take only 1/4 of tablets every few hours, I tolerate it much better, and dont suffer any stomach problems.
Im glad you found this family, they are a great help and can answer the questions from experience:(:(:(:(:(:((something I wish noone could)

Im sorry you had to cancel your trip, I understand totally, thats what struck me in your story. My wife and I were in the planning stages of going out to the Grand Canyon this fall, but I decided the driving and flying might be a bit much for me at this point.

I wish you nothing but good luck and good health, and as I said, take advantage of this place, there are alot of good people here, helpful, understanding, and all know what you are going through.

Kathy, this also sounds similar to me. Last June, at 40 years, I woke up with a droopy eyelid. Never had any vision problems though. By July I was diagnosed with MG and had a thymectomy in Aug.

We were leaving in a week to Orlando after I was diagnosed. GP wanted us to cancel, neuro said we could go, but sent me with orders for a plasma exchange in case I crashed. We told kids we could reschedule for Christmas break, but we decided to go in July. I'm glad we went, it took my mind off of the upcoming surgery.

I take Mestinon every 4 hours from the time I wake up which varies from day to day. I get 4 - 5 doses a day in. I take it with and without food.

Wow, I just checked in and can't believe all the warm welcomes and words of encouragement. What a warm community. What would we do without the internet.

So far I feel great, no tiredness, and my eyelid and eye seem to be responding to the Pred and Mestinon that I've ony been taking 6 days so far. Don't know if I just haven't had them in my system long enough to start experience some of the more bothersome side effects. No stomach problems. Sometimes get a little "warm" but definitely tolerable. Actually I think I have more energy since I've been eating a lot heathier -- cut way back on salt intake, more fresh veggies and fruits, lean protein, whole grains, etc.

One thing I'm learning for all of you is "one day at a time"

Tomorrow I call the neuro to update him since my appointment last week.

Hi Kathy and welcome.
Its a great place to get support and help, as we've all usually been through it before.
Look forward to seeing you around
Kate

Hi Kathy - - Welcome (sorry to be late - but just got back from wonderful vacation)
You sound like my twin! I was dx'd in June and started Mestinon. Like you, my symptoms are minimal compared to many others on this site. However, I have (and continue) to learn so much form everyone's posts.

Glad Mestinon is working for you - my neuro said on last visit I need to 'discover' the dosage and timing that works best for me. Once you learn your triggers it's easier. Like I can tell dosage is slipping away when I begin to marble mouth or when a particular place in my right arm feels dead heavy (which is what started al this!).

However, I'm allowed to make the adjustments myself only because I have no breathing issues (passed pulmonary function test with flying colors). If breathing were to become involved - -everything would change.

Sounds like you have a good neuro - - what a difference that makes.

Once again, welcome to great site with terrific folks who have tons of info to share with us newbies

Sue

Just Keep Positive
 

I think most of you know my husbands story. Nothing has worked for him. He was even on the Rituxan trial which I think initially made him better but after his last 2 crisises the Ritixan acctually made him worse. He is now on 80 mg pred. every day and mestinon 180 timespan 2xd not to mention the meds he is on because of the prednisone. I have no idea what to do. He is not in control and on the days he feels good he pushes it beyond the limit (obviously when I'm not around). Today I had to call him to say stop what you are doing and relax!!! Perhaps I should have posted this on another thread, but I want you all to know that it could be sooooo much worse.

God Bless all of you
Janet

Welcome!
 

Welcome Kathy!!!! Am glad you found this site and got your diagnosis so quickly!!! They're a great bunch of people here, so feel free to hang around, and say what ever you wish to, ask what ever you want to! As you can see, they all can't wait to welcome you. Looking forward to seeing you around! :D

hi kathy. i'm a noob also, to the forum and the disease. i was diagnosed about 3 mos. ago. my ptosis has been present and treated as other things on and off for at least 2 years.