I certainly don't have answers to all that you have brought up, but I can encourage you in that just because you are in this position right now that doesn't mean it will be forever.

I was diagnosed 25 years ago when I was a single mom of two teenagers. Know how you feel about wanting to throw in the towel on many days. Stress was usually what made mine flare up; however, it was not the ONLY thing. Sinus infections, menstrual periods, injuries to my body (I'm a Klutz.) - basically anything unusual that happened to my body. Yes - mine started as Ocular MG also but did turn into generalized mestinon. Mine was in remision for two or three years at a time and the last time it was in remission it was for 8 to 10 years. What a blessing! .

i sincerely hope this has given you hope (no pun intended) for the future.

Now on to some practical atvice. If you haven't already, let your neurologist know tjhe problems you are having - talk to his nurse in between appointments. He may need to change your meds. I know that I could not tolerate prednisone at high doses and they will not give it to me at all now. Ran my blood sugar levels up and made me EXTREMELY hyper. and not able to sleep. You surely don't need that with all that you have going on. Although Prednisone does work and work quicker than some others, there are several other treatments for MG and only your neurologist would be able to determine what is right for you.

As far as your symptoms being mostly gone one day and back the next, that is not unusual. In fact, you probably are having fluctuating symptoms during the day and just don't realize it with your full schedule. If there is any way you can rest during the day or rest your eyes, do so. I used to go to my car (had 30 minute lunch break), down my sandwich and get a catnap. Also, actually rested on a couple of 15 minute breaks a day. Just close your eyes and relax sitting down somewhere.

Quitting work was not an option for me but worked for great company and over the years when had serious flare ups would get full salary for a week to a few weeks. Talk to your HR Dept and find out what the policies are for you.

Back to your meds - am surprised they started you on 60 mg of prednisone at first. They usually start out at 5 or 10 and increase it gradually. Has your doctor talked to you about Mestinon (pyrogistiomide bromide is generic). It is for symptoms only and my doctor prescribes maximum 60 mg 4 times a day. Works great.
When I had ocular only symptoms, my ptosis would be gone within 30 minutes of taking it. I think when I started out, I took more than that, but long-term use at higher doses will or may cause damage to the fine nerve endings (according to my neuro)

If you are not attending a church, consider that. There is never enough support for a single mom but the prayer support alone and just knowing that people are praying for you helps. I certainly will add you to my prayer list.

Jetty Bo

Hi Jetty Bo, first response to my post is ! Thank u so much. You certainly did give me tons of hope. I'm feeling a wave of sleep coming and wanna ride it. I will reply in better detail after. Thank you again

Welcome to the group. I started on mestinon, prednisone -up to 20mg, imuran. I could move the first two years, but still had mostly bad days. I worked almost every day, and took a nap on my lunch break. I've had to change jobs twice because of stress. After two years my symptoms got so bad that I didn't have strength to sit in my recliner for more than two hours a day. That's when my neuro started me on IVIG, now I have mostly good days, with limitations. Please take heart, there are a lot of treatment options. This group is great. We are here for you.

Thank you both with advice on treatment. Thus far at diagnosis and flares I've done well with prednisone and rest. I just get so upset when I have 13 days prednisone in me and wake up to my eye being more lazy and droopy than when the flare started. But I do recall the same thing happening when at a much higher dose when I was diagnosed. I'm seeing my neuro weekly to manage and God willing resolve this. I'm so sad that I did not realize the stress I was under and still am would cause this.

Meanwhile is anyone else on LDN or do anything diet relate to reduce symptoms or encourage remission?

So in following up my antibody levels are very low but higher than at diagnosis although not as bad as at diagnosis bec of course then I didn't know what was happening and eye issues ramped all the way up. This time I knew it and starting at a low dose of prednisone. Up to 40 as of yesterday. Ocular flare started 10/13.

I do recall up/down with 60mgs at diagnosis. I'm trying to be patient as this is all so discouraging. But have taken all your advice and now have a mestinon Rx waiting for me. I'm praying it resolves these ocular issues while the prednisone does its thing. Thoughts, advice, encouragement?

Hello and welcome to the group.

The most important advice for most folks is to find a neurologist who is used to treating MG and is one whom you trust, and then to take their advice and to report symptoms, problems etc.

The usual problem with neuro's are they are hard to get to get to see and not often available for the ongoing difficulties and advice. To get around this, I read everything I could find on reputable sites (like the Myasthenia Gravis Foundation)
http://www.myasthenia.org/

Good Luck

Thanks. My neuro is a myasthenia specialist.

Ok soooo happy to report symptom relief with taking first mestinon. Ptosis and diplopia not 100% resolved but def not what it was- thank God! I took one 60mg dose n will monitor to see when it wears off. My question is that since it provides only symptom relief and short term at that- does it mean that the effects I experienced are the maximum benefit? Since it's short term I assume it means it does not build up in your system. So does this mean what you get first round is best to expect? And as the prednisone is doing its job will you get more benefit from the mestinon?

Mestinon stays in ours system 4-5 hours. It wears off, and does not build up in or system. I asked my pharmacist this same question, and she did not know-I learned it on this site! Anyway. Mestinon peaks in about an hour or so. This is how I know that I needed to decrease my dose on several occasions. The side effects of mestinon are the symptoms of the MG. I am so glad to hear that you are getting benefit from Mestinon; watch out for tummy troubles. You can search in past discussions about what to do for this. I used to eat small snack with each dose at first. I couldn't eat spicey foods or hard to digest foods. As my system adjusted, I could take it with just a cracker or two. I also took gas X. Mestinon can be chewed if you need relief quickly; it lasts longer if taken with a meal verses just a small snack. Also, Mestinon has been most effective with most people when taken on a regular schedule. Like I said, my dosage changed as MG was more under control.

You asked about diet. I try to be gluten free, dairy free, sugar free, and not much red meat. I take a vitamin drink that helps me feel better called Spirutein. A high protein diet is good for us. I don't believe that diet can heal us, but it can make us feel much better. There is a web site called "Eat to Beat Myasthenia Gravis" It has a list of food suggestions.

Good Luck!

Just a thought... If your neuro hasn't already checked your Vit. D levels, you might ask him to do so. Many MGers show decreased levels of Vit. D. As I'm sure you know, Vit. D is important for overall health and may also have a specific benefit for those living with MG.

Barbel & Happy Guy thank u both! In July my D levels were 31, the low end of normal which my neuro was ecstatic about. My antibodies were 0s across the board and I was doing great. 31 was t good enuf for me so once I finished breast cancer rads (yes the saga unfolds) I resumed liquid D drops under the tongue and I take 2 or 3 per night to get on the high end of normal for now more reasons. So curious how high my D is now- once I flared asked him and he refused saying it was just great in July. So I'm gonna ask my onc to take it next week.

And oh boy did I learn my lesson with tummy issues today :'(( I need to figure what to snack on while my body adjusts. And yes I get that mestinon leaves our systems like u say. But on the treatment thread for it some people report it working right way, stop working after some years or took 5 months to work. But I wonder if as the disease gets more stable the mestinon may work better or is less needed.

As I said I'm grateful for any type of symptom relief. It is very sad and discouraging ptosis and diplopia! But I'm looking forward for prednisone to work which I'm trying to be patient with since starting at 10mg 3 weeks ago and now just at 40. Will take longer I suppose, thus my reason for doing mestinon. Decent strategy?

Good morning, is this par for the omg course :( 3 weeks of prednisone, started at 10, now at 40 and now ptosis in other eye? Mestinon worked great first 2 days then yesterday and today it's now working differently by keeping right eye open, right eye ball doesn't drop to bottom now but slightly up higher to the right now producing a diff looking dv???

I did recall on prednisone developing ptosis in left eye after a couple weeks at 60mg and being this confused. Any advice. Please help. So sad and confused. Thanks.

PS taking 60mg of mestinon 3x daily. Too much, not enuf? I know too much is not good either. How to tell if to which to do if worked first 2 times and then not all the way?

I've taken 90MG Mestinon five times daily in the past. I am off of it at present and I am at about 80% of baseline. Mestinon is like aspirin with no long term help, and too much can increase your MG symptoms. I only use it when I feel like I have to. It has always improved my symptoms some for a couple of hours.

Thanks Tediii, how do I know how much will work! Why did it work at first and now not? I've tried 60, 90, 30, 60 again why bother trying it with all the overeating if not helping. I'm nervous to try more than 90.

These are good questions for your Neurologist, whom I presume specializes in MG. If he doesn't specialize in MG, you need to find a Neurologist that does.