If you rid yourself of the myasthenia first, most of the rest of your problems will fade away. Myasthenia is a miserable affliction and most people don't do what they need to do to make it go away...and your doctor may be the locus of the problem!

I was so severely debilitated by myasthenia four years ago that at times I couldn't walk, talk, dress myself, eat, swallow medication. I was in the worst decile, statistically for the disease. I was put on an immunosuppressant and a small dose of prednisone. I went through 17 rounds of plasmapheresis. One year ago in December, I went into a week-long coma.

It wasn't until I started on MASSIVE doese of prednisone that I finally felt I could live. I started on 100mg per day on the "on" day and 50 or so on the "off" day. I immediately responded. I am now like normal and I was at the bottom of the barrel for MG victims.

If you suffer ANY MG symptoms anymore, you may need to give this regimen a whirl. Many of the immunosupressants are worthless. DO NOT, I repeat, DO NOT listen to your doctor. Most are clueless about treatment of MG, even the finest and most studied of neurologists. Do not take no for an answer. 100 mg of prednisone will probably not hurt most people (though, they too, have side effects and you WILL need to taper and wean yourself off), but, the flipside is you may have a chance at recovery. Yuo must pull out all the stops and wage war against this miserable disease.

From,
Bottom of the barrel

Hi, Whirlwind. Floaters are usually considered normal, unless they are really a sign of something else going on. What did the eye doc say about them? Did you bring them up? Does the blurry vision go away when you shut one eye? If not, then it's probably not from the MG and you should see him again about it. Don't assume everything new (i.e., any new symptom) is from the MG. Sometimes other diseases or drugs can cause new symptoms. Always check something new or different out with the appropriate doctor.

I hope you get some answers soon.

Annie

Yes the blurry vision does go away when I shut one eye., I told the optha about the floaters, but he seemed more concerned with the tests he was doing and diagnosing MG.......I have some questions., since I am completely new to this., I know they say your muscles get weak., etc., do you get muscle pain also? achy? or just tired and weak? Does the blurriness come and go in the eyes? I know from August till December My eyes were double vision and bluriness consistently., and then I got a bad sinus infection and they put me on a Medrol Pack and then it was gone for a couple of weeks., then it came back again., and then when I took a small dose of Prednisone the end of March it went away again., and it is slightly back again., if I am tired It worsens. It seems out in the sunlight I am sensitive to the bright light., but I have noticed the more tired I am the worse the vision is. But sometimes it is just bad till I took the Medrol pack and prednisone.......Thanks for all your help

I know, this can all be really confusing at first! I'm glad the blurriness goes away when you shut one eye. That means it's the MG.

The reason your eyes have blurriness or double vision is that the muscles in and around one eye are weak to varying degrees; same with the other eye. Since all the muscles of both eyes are not working the same way and in the same strength, they are "focusing" differently. And, yes, that weakness can come and go throughout the day depending upon how weak the muscles are. There are lots of muscles in and around the eyes!

How about a metaphor? The eyes are kind of like ships in rough waters (water being the muscles). If the waters/muscles are calm (and not weak), the ship/eyes are relatively okay. No blurriness or double vision. The more turbulent the waters are around a ship, the more the ship is in motion and cannot stay steady. So the more you use your eye muscles, the more they weaken and the worse your vision gets. Sorry, that wasn't a great metaphor but I hope it helps.

What is making your muscles weak is an autoimmune process. That's why steroids, aka medrol, works. Steroids suppress the immune system so that you create less antibodies attacking your neuromuscular junction.

Anything that makes your immune system worse would theoretically make your MG worse (increase antibody production). Being tired, like you said, makes it worse and can, ironically, make you feel even more tired!

It's not the "sunlight" that usually makes people worse but the ambient heat of the sun. Any heat will make you worse. Infections, lack of sleep, stress, surgery, etc. can all make you worse.

So, the opposite is true. Staying calm, being happy, staying well, sleeping well, staying neither hot nor cool will all make you feel relatively better.

When I've been typing on the computer too long, my arms, especially my right one, can get much weaker. They can get achy and in pain. Why? Because overuse of muscles, even in people without MG, can cause secondary pain. Talk to anyone who is a physical therapist! When I've overused my back muscles, they can get so weak that they cramp up and spasm. There have been times when I can't even stand or they are bad even when I'm in bed. Now that's the extreme but that's what can happen when your MG gets worse. Right before my MG crisis, my back was so bad I couldn't walk. Those back/chest muscles are called the chest wall muscles. You need them to be strong in order to breathe!!!

So if any of your muscles get achy or cramp up/spasm, it should serve as a "warning" that your MG is getting worse and you need to rest more!!!

The more you do, the weaker your muscles get. Then you need to rest. Just listen to your body and it'll tell you what it needs.

Sometimes putting a cool washcloth on your eyelids or sitting in front of a fan with your eyes closed can sometimes help. Coolish conditions can make MG better but not too cold because cold can make it worse. It's a real balancing act!

Make sure you go to www.myasthenia.org and read all about drugs that might make MG worse. Benadryl is one of them. I can handle small amounts of it but everyone is different.

Have you ever been checked for allergies? People with sinus infections sometimes have hidden allergies (respiratory or food). Do you have a good allergist? Someone I know has respiratory allergies and uses Astelin. It's a nasal spray but it's also an antihistamine like Benadryl.

Just keep on reading. I know this is hard but it's doable. I hope you have a good neuro who will figure all this out and help you.

Annie

Hi Annie,
I have had allergies all of my life I take singulair and zyrtec on a daily basis., that what they thought my blurred vision was from , allergies., and then when I took the prednisone in December it went away., so they thought it was still allergies. My vision was so bad before I took the prednisone ( and at the time I had no idea about the MG ) I was walking off balance at times., it was so distorted and blurred and doubled it was terrible. Right now it is not at its worst as it was in November beginning of December. My vision does seem shadowy consistently., then the blurriness and double vision sets in at different times., depending on my exertion. I get terrible muscle spasms in my feet toes, and fingers. I am going for the blood work Tomorrow., and I have a appointment with the Opthomologist for a follow up after blood work at the end of next week. Hopefully he has the blood results , he says they can take a week or longer to get the results back as they send the blood work away. Annie, I really appreciate all of your advice , it has helped me so much. Thank you,
Nancy

I know how scary the vision thing can be..........I couldn't see @ all for a while there- eyes were just too darn weak.......I also walked like I was on drugs............it was awful......

The first year (for me) has been the hardest, b/c everyone is trying to figure out meds and what works best for YOU, as this darn disease is different for everyone........

As for the fingers and toes - towards the end, my fingers would stiffen up to where I couldn't even bend them @ all - toes too......I was also waaaay anemic - so I was in a lot of pain - some iron worked for me.........

Hang in there, hon! I does get better!

Erin

I had my blood work yesterday., I have an appointment with the opthamologist on April 15, 2009.......I guess it is wait and see., now.

Hi there hcmiller92!

I can sure understand why you are so passionate. I'm glad your regimen worked for you - must be such a relief to have found a solution for yourself. I myself do not have much luck with the Prednisone, but do with an immunosupressant. IVIG works really well for Erin, but again - that one doesn't do much for me. I was taking the immunosupressants and Mestinon up until I went into my remission.

Just pointing out how different we all are. And that's something the newly diagnosed need to understand as well. I remember getting so depressed when I didn't get the bump from the IVIG! I just thought all treatments were equal in all people, but realize that it's not the way it is.

Best of luck to you - I wish you continued success with managing this miserable disease!

I bet a lot of your recovery has to do with your fiesty personality!

Fiesty personality long before recovery. When someone says prednisone didn't work for me, it's because they never took 100 mg. I'll put money on it! Best, Curt