I was recently diagnosed with mainly ocular myasthenia gravis, other than being exhausted much easier. I am worried in researching how it would/will feel if I develop the generalized symptoms. Can you just not move, does it hurt to move, or is it just really really hard to move? So very confused and not sure what to expect if I get worse. My dr is convinced I won't develop the general symptoms that they aren't really telling me what it would feel like. My arms do get really tired at times, but I work alot so how do I tell the difference? I know I probably sound paranoid but I am so worried of this unknown and how it may affect me in the future.

Thanks for any info.

Hi and welcome! You're not being paranoid! You are facing a disease that you are not "acquainted with" yet.

Myasthenia gravis is all about weakness. For example, for us women, drying our hair might be one of the first things we notice makes our arms/neck weak. Any repetitive or sustained activity will make the muscle weakness worse. The more we do, the more of the muscle "gas" called acetylcholine runs out. Our muscle gas tank is on low to begin with so it takes less effort to run out. Antibodies attack the neuromuscular junction, where the acetylcholine goes from the nerves to the muscles. So there are fewer places for the gas to go into the muscle.

The way MG makes me feel varies from day to day. With a little muscle weakness, I just can't do as much. My arms feel, well, weak. When the weakness is more generalized, I sometimes feel like I'm walking in quicksand. Like it takes so much effort just to move. There are times when writing a check is almost impossible and others when it's just fine. Muscles can get so weak that they can twitch, cramp up or spasm. When the chest wall/breathing muscles get weak or spasm, I know I'm in trouble and my breathing will be affected.

MG is different for everyone. Some people have it really bad while others have it mild. Resting between activities helps a lot. Staying out of the heat, which can make MG much worse, really helps.

It can be really deceptive thinking you have only ocular MG. Very few people do have only that. There's no guarantee that it will not progress. I hate when doctors act like psychics and say things like that. He cannot say that it won't progress!

I guess the way you can tell about muscle weakness is if it is variable. There will be some days when I walk up the stairs (one flight) and am relatively okay. Then others, I start walking more slowly because I can barely lift my legs up. During my myasthenic crisis, I couldn't walk up stairs at all. A crisis is when you get much weaker overall - but don't freak out about that! Some people never have one or only one.

You have every right to be worried, especially when a doctor is not giving it to you straight. Have you tried to find an MG expert? The MDA usually lists the experts on its website: www.mdausa.org For more info, you can go to www.myasthenia.org too.

MG feels different every day. It's not "fun" to have it but I've learned to live with it. I do have to adapt things I do. I have chairs or barstools in almost every room so that I sit instead of standing because that takes less muscle energy. I often use paper plates instead of "real" ones so I can do less dishes. Stuff like that I've done to adapt my life so I have time to do what I want.

Have they done the antibody tests? EMG's? If not, they should. My neuro said that he's had patients who don't feel weak and have really bad EMG's.

Just try to relax about it all until you know more. Definitely consider a 2nd opinion with an expert. Talk to your family/friends. And take a deep breath and tell yourself that it'll be okay. Facing a disease is very hard and you need to give yourself a break!

Annie

Hello and welcome! I posted my MG experiences on www.mgsouthtexas.org

It is long winded, but gives a pretty detailed acct. of MG!

Can;t wait to hear from you!

Erin

Hi Atlanta - Welcome!!

I have only been diagnosed for a couple of months - but have been searching for a diagnosis for about 3 years now. I do not have MG very badly compared to many of the other folks here.

For me, it was my right arm that was my main complaint. Got tired when I was using it - - especially if my hand was above my shoulder. Noticed my stamina was not what it used to be, but chalked it up to aging. There was no pain - just fatigued arms. And it went away after I rested. It's just that I used to be able to groom a couple of horses before a break -- and it got to the point I was taking four 'rests' to get one horse done!

Not until I was diagnosed and on Mestinon did I realize how much I had been compensating. My vision was clearer (my neuro says I have ocular, bulbar and generalized symptoms!), I didn't need to help myself up the stairs by hauling on the railing, and I could 'jump' out my chair to get the phone without using my hands and getting stabilized on my feet!!

I actually began to feel like I wasn't so 'out of shape' as I had thought - - I 'just' had MG!!

So for now (and maybe forever), I am one of the lucky ones who can get by on Mestinon and can still do most things I want to do - with awareness of how my body is reacting. Sometimes, I just have to stop what I'm doing to rest a bit. Then I can resume.

Anyway, hope this helps. I have never experienced and pain - just weakness and heaviness in my arms and legs. And recently, some marble mouth. Have asked my neuro what's next -- no one knows. I do hope that since I have no thymus issues, I may just stay like I am. But, if not, will deal with whatever comes then...not now.

Again, welcome. This is a terrific group and I have really learned a lot from them.
Sue

Here in the UK they are not supposed to diagnose you with occular MG until you have passed the two year mark and your symptoms haven't progressed. Saying that though many drs still do diagnose it as occular then move to generalised.

How does MG feel. Yesterday I felt ok, I stripped the bed and before I had got the sheet off, my legs were shaking, like I had finished a 5 mile run. My body can feel totally normal (although sometimes when Im really bad I can compare it to how I feel just before getting a heavy cold or flu, not really achy but it doesn't feel right.) and then I go to do something and I cant do it. Like hanging washing on a line, as soon as my hands go above my shoulders my arms shake, like Ive been lifting weights. Or I can be fine getting around the house, go to climb the stairs, get one foot on the stair and theres no power there to get the other foot up. Yesterday evening my husband was putting on some socks for me (I hate having cold feet) and I couldn't hold my leg up for him to put it on. Even though he was holding the weight of my leg, it shook. I just couldn't have my leg in that position.

Today I woke up with bilateral ptosis, its eased off enough in one eye for me to be able to see. This was all caused by stripping the bed and doing the washing. I may not pay for my actions on the day I do them, but boy I will pay the next.

As Annie said the first thing I noticed was I was struggling to dry my hair. I used to straighten it everyday, I had to give up. Now if I want to dry my hair I sit on the end of the bed, rest my chest on my legs and give my hair a quick blast with the dryer. Theres no styling involved! As I now go au naturelle and have curly hair. I use a shower stool to sit whilst I have a shower, so that my legs dont shake uncontrollably. You make adjustments you have to.

I also noticed when it first started I was struggling with putting a duvet cover on the bed. I couldn't hold my arms out to do it. Then the legs started, I go out and walk the dogs for an hour and find when I got back to the car I couldn't move and would have to wait until they had rested enough. I started falling, how much that was to do with the ptosis, having my balance shot to pieces or my legs not behaving I don't know. But little by little the MG crept up on me. I was still working at this point, how I really dont know.

It got to the point where I collapsed in June 2008, I spent a week in hospital. I have never worked since and was medically retired aged 35.

I really hope that your symptoms stay occular or if you do get it generalised it stays mild. I wouldn't wish this on my worst enemy. Although maybe a few neurologists........no Im only joking. I wouldn't wish it on them either.

Love
Rach

Hi Atlanta,
I am recently diagnosed also and am so glad you asked the questions you did. I am going to post an update this afternoon but had to respond to your questions. My Nuero/Optho said he was diagnosing mine as Ocular right now also. However, he did say if I ever had trouble breathing or swallowing to get to the ER immediately. I also have chronic fatigue and weakness in my left arm and hand. he didn't think that was MG. I was so amazed at the people who said the first thing they noticed was having trouble blow drying their hair. I started notcing that at least 6 months ago and thought I just wasn't sleeping good. It is so frustrating Atlanta to have to wait for answers we want now. Just know you're not alone. I am dealing with the same issues as well as many others on this forum. He wants to start me on mestinon but not until the testing is all done which is a month away! My eye hasn't been the same since I was there Wed! They did so many tests on my eyes that I literally couldn't hold my right eye open anymore. As thankful as I am to have an answer I just want to get started started on the meds so I can hopefully get somewhat of a normal life back. Hang in there, we'll make it. I thought it was so interesting that the person from the UK (sorry can't go back to see who wrote it) said they don't diagnose just ocular until testing is finished. I am confused as to why they would diagnose someone with ocular if they are having the chronic fatigue and muscle weakness. Is that standard in the US or does it depend on the DR?

Hi Atlanta,

My Mg affects me with fatigue, droopy eye and shortness of breath. Thank goodness I haven't had a crisis as some people on here. The weakness sometimes can be hard to explain. I'm a very active person usually and the fatigue stopped me in my tracks. As a mother I was used to going with activities all day long sometimes up until 8 or 9 at night with chores and such. This weakness brought it to a screeching halt. Usually with MG, after you are rested each night you can sometimes function. My neuro told me that the more you use your muscles the more fatigued you will become. I've always exercised and I haven't been able to resume that normally. I guess the best way I can describe the weakness to me is that my legs and arms feel like rubber bands. They get to the point that sometimes I feel that I could fall if I press on without resting. I told my husband that it feel like the life has been sucked right out of me sometimes. I am on Mestinon 3x a day. When I take it, it gives me relief for about 4 hours and then the fatigue sets back in. I hope this helps. My first symptom was actually the droopy eyelids and then a few months later i started experiencing double vision. Then after that the weakness set in. Just stay on track with yourself and rest as much as you can. I sure hope things go well with you. Take Care.

i went with only ocular symptoms for nearly 2 years. other sypmtoms presented during a bad case of the flu. i understand this is common. began with diffculty chewing, biting and swallowing. difficulty lifting above the shoulder. difficulty holding my head up for extended periods. the swallowing really became a problem. i lost 15 lbs. in 2 weeks. another dead giveaway is your voice goes nasal after only a few minutes talking. all this is controlled with mestinon now.