Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hey all, my names Mike and I'm unfortunately part of this group now (no offense haha).
Quick backstory:
September 2018: First symptoms- tongue weakness after eating, double vision/blurry vision (like somethings in my eye) towards the end of the day
October 2018: Speech issues start up, chewing and swallowing becomes harder
December 2018: Officially diagnosed, pyridostigmine 60m 3-4 times a day starts up
Now I just have varying levels of the above, with the excepton of some slight arm or hand weakness very rarely, and unfortunately I'm kind of feeling that a little now, but it may just be dehydration...
Speech is now pretty bad all the time- I take 6+ pills a day and they absolutely help me eat and swallow and help my eyes as well, but they no longer do much for my speech.
My neuorologist thinks I am one of the "lucky" ones that doesn't have generalized MG. I am also 37, which I guess is on the younger side, at least for males. Not that it matters, but my antibody levels in my blood test were low- like 9 and later on, 10.4.
No thymoma- not sure if it's enlarged or not though.
I know that everyone is different and there is no definitive answer here, but just based on your experiences, here are my 3 questions about timing:
1. At what point should I believe my neurologist that I "probably don't have generalized MG" and I've maybe seen the worst of this? While it feels early compared to most of you, it also seems that most of you had a crisis very early on and symptoms advanced FAST. I'm like 8 months in now and speech is getting way worse and swallowing/chewing has become harder, but I really haven't experienced much muscle weakness. In fact, I'm in the best shape I've been in in a long time because as soon as the diagnosis happened, I started losing weight and getting stronger- kind of a "if this takes my strength, I might as well get as strong as possible first" thing. So when do you think I should feel safe from generalized MG? Or is there really no way to tell? Did any of you have it take a long time before it spread away from your head (seems like it starts in the head for most)?
2. If you aren't one of the unlucky ones who had it really bad and was forced on prednisone, when did you decide to start taking it? My neurologist basically said it's my decision at this point if I want to start taking it. I almost feel silly saying this when I hear about how horrible some of you have had it, but I feel like I'm at that point. I can go on long walks and go out dancing and partying and feel great body-wise, but I have completely stopped socializing at all and am at the point where I'm not seeing friends or really talking to anyone at all anymore because it's so hard. Summer is coming up and I'm thinking of not going to all of the big camping/party weekends I normally look forward to because talking is so difficult that I can't be myself and everything ends up being a crappy version of what it should be, because I can't be a part of things. I'm single, currently unemployed and basically live alone and life has become quite miserable, and not all that worth living. So I'm thinking that if prednisone can give me my speech back, it's worth it. But, as I'm still technically early in this journey, should I wait? Or I am there now? I was just told by many: "Oh, you don't want to be on prednisone." But I think I do.
3. I am guessing that since my MG isn't as bad as it could be, I wouldn't necessarily be put on a huge dose. I am also assuming that since I don't have it as bad, and it's pretty new, it may start working on me faster. Is there any truth to that in your experience or did I make that up?
Thanks for reading and for any help! I at least tried to make this short...
Many people have mild disease in MG but we get a skewed view because those people are not online talking or blogging about it. And it comes and goes over time. You are not in the clear for generalized until the three year mark. After 5 years then you are considered not likely to generalize.
Prednisone is personal decision since everyone is different. They don’t keep you on high dose long. But they do have to ramp up then back down and that takes several months. The high dose depends on when symptoms disappear and you don’t know that until you are taking it.
There are various levels and indeed descriptions of MG. I have BulbarMG (arguably a mild form of GeneralisedMG) with the initial symptoms being much the same as you describe. There is only muscle weakness in the mouth area, head if you include the eyes. There was probably the best part of twelve months between what I now see as the first symptom - that was slurred speech at a function long before the drinks started to flow. That happened a couple of times over the next few months but was ignored by me, until the day I was interviewed for a TV programme (not about MG) and the voice just went, I couldn't string two words together. Whilst this was going I did have what I would describe as 'tired-eyes' and probably had those for much longer than a year - I put that down to hard work!
At that point things progressed quite quickly and within a couple of weeks I was hospitalised for tests and basically seeking the correct medication needs. From that moment on, things kicked in big-time - there is light at the end of the tunnel, usually six to twelve months.
You're completely right - we're all different and nothing is more different than the journey to full diagnosis.
You question not feeling weak - neither do I, it's all about which muscles are affected by MG. As Bulbar is all in the head - so is the weakness confined to the head. The rest of your body will be OK.
I suspect that you do have BulbarMG and at some point it going to come and really bite you.
Keep talking to your Neurologist.
Best Peter
Welcome to the group!
Sorry to hear you are having symptoms that make life difficult.
My MG started with double vision, then in a few days to eyelid droop. I went to the eye specialist who said "MG" and by the time a few weeks later got to a neuro, already had trouble talking, chewing and neck strength. My neuro said ocular progressed to bulbar (head) and then I had trouble breathing, arm strength and leg strength etc, -- general. That all happened from start to general in a few weeks.
It is true that some folks it stays in the eyes, some in the head and most of us progress to general. I think if the head problems are as bad as you have them, it is time for something more than mestinon. We complain bitterly about the side effects of our meds, but for most of us they are minor in comparison to how MG messes up our lives.
Good Luck
Russ
I can no longer deny that the weird feelings I'm having in my arms and hands are just random and "they're probably going to stay at this level" either. It's definitely progressing into my body, and probably will get worse. Ughk.
I did go for a 4 mile hike the other day though, and felt pretty good the whole way through, and didn't feel as dead as I thought I would the day after or today. I couldn't talk about it for more than a few minutes, but hey, I was able to do it, and that's a lot more than many can do. So I'm in the middle of being hopeful that I'll be able to continue at least doing smaller hikes for awhile and being terrified that my ability to do that is running out...
Man, this disease sucks.
I just left a message for my neurologist that I want to start taking prednisone and to let me know if he can just write me a prescription or if I need to come in to talk about it first.
I never wanted to have to be on it, but your posts (and this forum in general) helped me come to reality that it's time, and I am now hopeful again for the first time in awhile that this may be what fixes me.
So thank you!
(and yes, I know it's not going to fix me. But if it can give me my speech back, that feels like it may just be good enough at this point).
I'm sure I'll be posting a lot more on here.
For one thing you CAN continue hiking. You can continue everything you do except if it causes you harm or severe symptoms. Just live your life. I would listen to your doctor because obviously he or she is the one doing neurological testing on you. Going a couple of years now without it moving to your limbs is a good sign.