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...
So I seem to be at a crossroads in my life. The last week has been by far one of the best weeks I've experienced in a very long time. But at the same time, I've experienced two days of watching my body fail me, and being unable to keep up. I find, that the more I do, the worse I get, but at the same time, I enjoy myself so much. Winter is officially here, and I've noticed that the cold is really messing with me. I'm not handling it well, and the other night was really proof to me that I have to be seriously careful about it.
My friend was joking about it being warm in her car, and her boyfriend to tease back opened all the windows. It was 35 degrees outside, and we were doing about 70 mph down the highway. He left them down for probably 10 minutes or so, until we got to the bowling alley. In that short time, my body was convulsing out of freezing. Teeth chattering, massive cold spikes, uncontrollable spasms and shivering.
I asked him earlier to put them back up, but "I needed to be a man," is what was thrown at me. We got to the alley, and it was all I could do was to focus on getting inside to the warmth. I managed to get in, and sat down for 30 minutes while I dealt with my body readjusting to the temperature. It was painful, but needless to say I survived.
Needless to say, it tore me down a little, and I lost a bit of my strength. So we went bowling, and for the first two games or so I was ok. I felt my body starting to get weaker, but I was having a 10 minute break in between each frame due to the amount of people, and us goofing off. It was a great night, until game 3, frame 8.
I don't know what happened. If you have read my Concepts journal entry, then you have a basic understanding of how I base my MG. Well I went from being at 45% to 15% in a matter of a swing. I can't figure out how my calculations were off, or how I rapidly dropped so fast. The ball fell out of my hand, I fell to the floor, and well the rest was misery.
My friends helped me up, and I sat the rest of the night, really unable to do much. I completely killed the evening for all of them. All the joking went to seriousness, and honestly for me, it really sucked. I felt all of a sudden the focal point of attention, and I hate that more then anything. After they all finished bowling, I got help into the car, and was promptly driven home, and helped inside.
My friends are great, with helping and all, but honestly I hate people seeing that side of me. I hate my MG being the topic, and everyone worrying about me as if I am dying. I guess for me it is difficult for me to be seen as anyone other then the person I try my hardest to be. Not to say that I'm being fake, but I am very selective with who gets to see me in my vulnerable state. People tend to manipulate me, and I've found when I'm sick, and they see that, it is 10x more likely to happen.
I saw a Neuro last week, and he said that the only thing he can really do for me is suppress my immune system with either the steroids, or the more extreme treatments. He didn't want to get into details, but from reading other member's posts of what they are on, I get a feeling I know what he is talking about. I'm terrified of doing this. My mom is always sick because of my sister's two kids. I'm actually on the verge of being sick now, due to them being here today.
So it seems that for me, if I get treatment, I am really putting my life in more risk, then self-managing the way I do. I'm so scared of dying, so scared of losing control over all this, and I sit here, lost. So here I sit, tonight, another sleepless night, debating what I am to do. I don't want to be a shut in during the winter time, but at the same time I'm scared that all my prediction data is somehow misaligned, and that I need to go back to the drawing board. I personally think the cold did it to me. I've had this happen once before, but it was because of the heat. It completely drained me, and all systems failed, and landed me in the ER.
If you were me, and all the craziness that is me, what would you do? Are my fears about suppressing my immune system to help be stronger with this MG worth having? How do I prevent the other night from happening again? My friends are going to be themselves, and I find it very challenging to manage the crazy antics plus my MG without coming off bitchy or whining all the time. Where do I go from here?
My friend was joking about it being warm in her car, and her boyfriend to tease back opened all the windows. It was 35 degrees outside, and we were doing about 70 mph down the highway. He left them down for probably 10 minutes or so, until we got to the bowling alley. In that short time, my body was convulsing out of freezing. Teeth chattering, massive cold spikes, uncontrollable spasms and shivering.
I asked him earlier to put them back up, but "I needed to be a man," is what was thrown at me. We got to the alley, and it was all I could do was to focus on getting inside to the warmth. I managed to get in, and sat down for 30 minutes while I dealt with my body readjusting to the temperature. It was painful, but needless to say I survived.
Needless to say, it tore me down a little, and I lost a bit of my strength. So we went bowling, and for the first two games or so I was ok. I felt my body starting to get weaker, but I was having a 10 minute break in between each frame due to the amount of people, and us goofing off. It was a great night, until game 3, frame 8.
I don't know what happened. If you have read my Concepts journal entry, then you have a basic understanding of how I base my MG. Well I went from being at 45% to 15% in a matter of a swing. I can't figure out how my calculations were off, or how I rapidly dropped so fast. The ball fell out of my hand, I fell to the floor, and well the rest was misery.
My friends helped me up, and I sat the rest of the night, really unable to do much. I completely killed the evening for all of them. All the joking went to seriousness, and honestly for me, it really sucked. I felt all of a sudden the focal point of attention, and I hate that more then anything. After they all finished bowling, I got help into the car, and was promptly driven home, and helped inside.
My friends are great, with helping and all, but honestly I hate people seeing that side of me. I hate my MG being the topic, and everyone worrying about me as if I am dying. I guess for me it is difficult for me to be seen as anyone other then the person I try my hardest to be. Not to say that I'm being fake, but I am very selective with who gets to see me in my vulnerable state. People tend to manipulate me, and I've found when I'm sick, and they see that, it is 10x more likely to happen.
I saw a Neuro last week, and he said that the only thing he can really do for me is suppress my immune system with either the steroids, or the more extreme treatments. He didn't want to get into details, but from reading other member's posts of what they are on, I get a feeling I know what he is talking about. I'm terrified of doing this. My mom is always sick because of my sister's two kids. I'm actually on the verge of being sick now, due to them being here today.
So it seems that for me, if I get treatment, I am really putting my life in more risk, then self-managing the way I do. I'm so scared of dying, so scared of losing control over all this, and I sit here, lost. So here I sit, tonight, another sleepless night, debating what I am to do. I don't want to be a shut in during the winter time, but at the same time I'm scared that all my prediction data is somehow misaligned, and that I need to go back to the drawing board. I personally think the cold did it to me. I've had this happen once before, but it was because of the heat. It completely drained me, and all systems failed, and landed me in the ER.
If you were me, and all the craziness that is me, what would you do? Are my fears about suppressing my immune system to help be stronger with this MG worth having? How do I prevent the other night from happening again? My friends are going to be themselves, and I find it very challenging to manage the crazy antics plus my MG without coming off bitchy or whining all the time. Where do I go from here?
I must admit I disliked Mestinon enough to prefer the MG to the side effects of the treatment and only used it when I had to to be able to open my throat enough to be able to eat something.
If you really want to get better take the doctor's advice and employ the prednisone. But first go on a high protein, low carbohydrate, very low fat diet for a couple of months to shed body fat. You will be in a better place to cope with the side effects particularly in relation to sugar metabolism and blood pressure when you are used to being on the correct type of diet.
If you don't really want to get better keep on with your present coping mechanism but be a bit more careful since bad things can happen unexpectedly.
Believe me its much better to be in remission than to have to worry about how to cope so listen to your doctor.
Prednisolone is not a major immunosupressant in the way Immuran or Cellcept is so you dont need to worry about it so much from that point of view. The other stinking side effects are not related to immunosupression. You need to take them seriously but your doctors should monitor them to make sure they are in contol and give you the appropriate medication to avoid bone loss and so on. However only you can control many of the major side effects by your diet. Nobody else can do that for you.
Gwyn
So you have our compassion, and I hope that you are able to come up with a plan very soon. Our plans can even change, but it is still a comfort to know you have one to work on.
Don't feel bad for "venting" on this site. It is what we need to do at times, and it helps to do so with folks who can understand rather than try to explain it over and over to folks who really have no idea, no matter how much they care.
You have to do what you think is best, but know that no matter what that is, you have some folks here that are in your corner and cheering you on.
God bless, and may He give you peace of heart and mind.
I'm so glad you shared this with us. As you likely know from the many replies, you're not alone! Hugs! (:
I wanted to share with you that I often struggled with this in college. I would frequently "fall" - my legs would just give out on me - and I was lucky to have friends that would walk me up the stairs, pick me up, or wait patiently wherever we were. That is not to say that there weren't those who completely misunderstood - I once was mistaken for being drunk by a college security guard as I couldn't walk straight, smile, and my eyelid was droopy - but I explained and we shared "war stories" and became good friends. Was it Dr. Seuss that said, "those who matter don't mind, and those who mind don't matter"? (:
I got a lot of help in college from friends who pressed me to be glad for what I *could* do, versus dwelling on what I couldn't. This is strengthening to me, even to this day. I wish you well in making the decision that profits you the most. Maybe you need to "doctor-shop"?
Be well and HAPPY new year! (:
Gwync, if I was living on my own, my diet would be switched back to a low fat oriented diet. Sadly, I don't pay for the food that comes into the house, and I'll be the first to say that my family is very very picky with what they buy and will eat. I have been learning to cook what they make, and I always do what I can to drain grease, cut fat off the meat, and such, but I'm not in a place where altering my diet is possible. It honestly sucks, but I have no way of leaving here, as there is no real help to be on my own from a money standpoint.
I can say I've been mistaken for drunkenness before, and have fallen in some bad places over my 10 years, but thankfully, I rarely go out alone. Aside from this cold I now got that is kicking my butt, I haven't fallen in almost 2 months. I do some very light exercises in the morning, and rest for an hour or so, and then go about my day as of late.
The mindset of enjoying what I got instead of focusing on what I can't do anymore is also a big help for me. I enjoy what I can do now, and savor everyday that I'm capable of cooking, or running the vacuum, or even going out with my friends. I have tons of downtime, but it is something I've gotten used to.
When I see the next neuro, I'll give the prednisone a shot again. Along with the mestinon. I'll do my best to remain positive. I'm just scared it is going to screw me up badly like it did 8 years ago, and that fear is kind of being my road block. I need to stop being so afraid and just do it I think. Vomitting, dizziness, blurred vision, and pain are something I can handle again for a few days to see if it will work or not. Better then not knowing and being where I am.