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?
Be well,
Heat bothers me a lot, but i get chilled easily, too. My body's thermoregulation seems to be off, and I have wondered about this problem and MG. My doctor says no, that our bodies' thermostats are OK, but he could be wrong.
To treat the root problem, you need some kind of immunosuppressant or steroid. The rest is only temporary symptom relief. A good doctor will help you find the least dangerous and most effective combination.
Take care. Hugs.
My current life is not wonderful, but very very much better than it was in June and July. I can do most things I want to do -- in moderation.
Sure prednisone or other immune system treatments have some problems, but they are sure a lot better than the relentless production of antibodies from our own immune system whose goal is to destroy our nerve-muscle interface. That is why many people died of MG in the days before the treatment.
Good Luck--and don't be scared of treatments--they are better than the alternative. There are several options--and surely one or more will work for you.
I have come to notice from the people on this site that mg doesn't act the same with all of us, neither does the treatments. Even our doctors don't have the same approach. But the one thing we all need to have in common is a positive attitude, and that we can try to help with.
May God bless you, and I hope you find the answer to your needs soon.
I realize that my MG could go south fast, and could be life threatening, and that is honestly what scares me too. I do my best to manage it on my own, without meds, and have for so long it just seems commonplace now. I don't have much of a life outside of the few activities I do on my better days. I can't work, can enjoy life to it's fullest due to the limitations, but honestly I'm content this way. Strange I know, but I've grown accustomed to life this way.
I have a very positive attitude towards myself and this disease. I do all that I can to not let it bring me down, even on my bad days. I do think a lot however, and that is where I get into trouble. And I'm thinking of where to go next year with all this. I want to be stronger, but I'm not sure if the side effects and possible risk to my health is worth it. Diabetes runs in my family, and I'm already overweight. It scares me to think of me getting it a lot earlier, just so I have a few years of improved strength.
I explained all this to my doctor too. He acknowledged my fears, but said it was the best course of action. That the risk wasn't anything I needed to concern myself with. I don't know about you, but me, I always worry about risk, especially when it comes to my body.
Hopefully that explains better. I feel trapped between two bad decisions. I am doing some soul searching and praying on it, in hopes of maybe gleaning a decision, or a path to go down. Right now I'm scared, and I don't want to be anymore. Thankfully I can share all this with you folks, and you will understand me. I sense a few of you might of been down this road yourself.
I will be blunt here, and tell you not to worry about coming off bitchy or whiny. Say what you need to say, and say it with conviction. I won't go into it, but I had to cut one very close person out of my life because of just what you experienced there -- the more I said I needed not to be pushed around, the more I said this or that was too much for my body, the more I did anything... the more this person made it about themself and how I was making stuff up and being a baby. There came a day when I realized I didn't need or want that in my life and couldn't cope with another confrontation because all my effort goes to coping with MG. (have to add that this person got help for their sour attitude toward everyone, not just me, and has come back around)
It's very difficult, but sometimes we have to realize that some people in our life need to take a back seat to MG, at least for awhile, so we don't have yet another stress to deal with. Concentrate on the people that do help you, that do make you feel good, that do not put you in bad situations because they think it's a joke. When you set boundaries, either people will fit themselves in (even if it takes them time to come around), or they will just drift away (because they didn't really care about you in the first place).
I'm not saying to dump friends, don't get me wrong. I'm only saying to focus more on the people that help you be the best you can be instead of making you feel like you're the problem. They don't have to understand MG, they just have to respect it and respect you.
Also, don't be terrified of treatment. I haven't faced treatment decisions yet myself, so I can't offer up advice other than this: inform yourself about every option so that you operate from a position of knowledge instead of fear. That way if you truly don't want a treatment, you know exactly why and have reasons for it. Fear of the unknown is never helpful (and I could write an entire library of books on that subject!). If some treatment makes you feel better, you'll be better able to cope with people who don't always have your best interest at heart.
Take anything I say with a grain of salt, because I've barely left the house in a decade because of undiagnosed MG. But, MG sure has filtered out a lot of people in my life who were only 'friends' because of how they could use me to fill in blank spots in their day or or do things for them. What I have left is people who accept me for me and don't judge me or pressure me. In that way, MG has been a very good friend in itself.
I hear what you're saying and I think maybe you need what I need -- an MG support group or at least some kind of group to meet with all the time and find a place of understanding and solace. Once I'm well enough I'm going to join a knitting group and a church group, and hopefully start an MG support group here.
I hope I haven't said anything awful or too strong, I just saw quite a bit of my old self in your post and hoped to share something. Like I said, take anything with a grain of salt, because you know you best.
As far as my friends go, the guy in question that did all this to me, isn't really apart of our group normally. He is a boyfriend to one of our group, so if she comes along, he winds up tagging along too sometimes. He is a nice guy most of the time, but he isn't familiar with my MG, nor does he really know to what extent it inflicts me. So for now, I will excuse his behavior, but she knows now to explain it in better detail, so this doesn't happen again.
I've been debating joining a local group as well, to get me out of the house. If all goes well, I will have a car next month, so I can start doing things outside the house again. Right now I'm pretty trapped here, whether I want to be or not, due to not having a vehicle to get around with. I tried biking last week, and well lets just say that I won't be doing that stupidity again anytime soon. :)
Today actually marks 10 years, and I'm still surviving, and struggling away, unwilling to yield to it. I'm proud of myself for that, but it is hard, I can't lie. I'm sorry for my fears and doubts, but after reading some of the experiences here, it is concerning. Guess I'm just having a moment where I don't know where to go. I had a goal in mind, a destination I wanted to head towards, but now, I don't know. I don't know where to go.
PS (while immunosuppressants will take longer to work, if you are patient you could try that. There are some here who choose only that plus Mestinon as needed.)
A lot of this discussion resonates with me right now so I thought I'd reply as well, I hope that's OK?
I have to agree with Merrin72 - some people just don't get that others are suffering and through their lack of empathy only add to the suffering!
For the past 12 months I've been seeing a psychologist to learn to deal with the impact of chronic illness on my life (everything from fatherhood to relationships to financial woes). I've learned to accept that you cant change other people and you can't change the illness, but you can change whether you choose to let it affect you negatively.
A lot of people have the belief that mind over matter conquers all - In some instances they are right but when it comes to MG and fatigue they are very wrong (as we all know). If it were that simple wed all be a picture of perfect health! Lets face it, who really chooses to live with any illness?
It's always fantastic to see someone achieve the impossible like getting up and walking after they've been told they never would again - but we are not all the same build inside and out, we are all individuals and we are all uniquely different, the reality is we cant all achieve this and we have no control over the physical aspects of our condition. We can only do our best and as long as we do our best we have nothing to feel guilty about.
This quote helps keep me focused when things start to get the better of me I hope it might help you as well ;)
A person has three choices in life. You can swim against the tide and get exhausted, or you can tread water and let the tide sweep you away, or you can swim with the tide, and let it take you where it wants you to go.
Be well,
Personally I am glad I dont' do IVIG.
I was on higher doses of predisone.
I am down to 10 now and on cellcept and I am very happy with that tratment. Along with my thymectomy.
Our immune systems are over active....that is why we need to suppress it.
I almost died so taking prednisone and cellcept is a gift.