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...
I was wondering if anyone has had any problems with pounding in the chest. Sometimes it feels like my heart is beating so hard that it is going to burst through my chest. Nothing I do gives me any relief. It's not this bad all the time. Some days it is only mild to moderate in severity but it is always there. I have had this continuously for over a month now.
Being a newly diagnosed MG sufferer I don't know what is a normal part of the illness and what is not. This support group has been a great help but I didn't see any comments about anyone having this problem.
Another question that I have is about the weakness. All the web sites that I have visited talks about how the weakness can intensify during the day depending on activity. I'm just the opposite. During the night and in the morning when I first get up is the time that I experience the most weakness. Some days I can barely walk so I just lay on the sofa all day. Depending on the intensity, the weakness gradually subsides during the day. Usually, by mid-afternoon the weakness has subsided to a a mild level. Then, after a couple of hours (around 6-7 p.m.), the weakness begins to intensify again.
I am taking 60 mg mestinon every 8 hours. I just finished a month-long regimen of 20 mg of prednisone.
FYI: Did anyone know that dogs and cats can have MG, also? We have a miniature poodle that was diagnosed with MG about 7 years ago. The local vet didn't tell us what he had - all he would tell us is that his esophogus was enlarged and we needed to have him put to sleep. When we refused, he gave us the name and phone number of the animal clinic at UC Davis. We took Benji there and they knew within just a couple of minutes what was wrong with him. They kept him for a week in intensive care and put him on mestinon liquid. Benji was on it for about 4 years then he went into remission and has been in remission ever since.
We mentioned this to the neurologist and asked him if I could have gotten this from Benji but he said that I hadn't. Most neurologists don't even know that dogs can get MG. After reading many of the comments from the support group I realized that there was no way that I could have gotten it from Benjis since several of the symptoms started appearing about 15 years ago, long before we got Benji.
Being a newly diagnosed MG sufferer I don't know what is a normal part of the illness and what is not. This support group has been a great help but I didn't see any comments about anyone having this problem.
Another question that I have is about the weakness. All the web sites that I have visited talks about how the weakness can intensify during the day depending on activity. I'm just the opposite. During the night and in the morning when I first get up is the time that I experience the most weakness. Some days I can barely walk so I just lay on the sofa all day. Depending on the intensity, the weakness gradually subsides during the day. Usually, by mid-afternoon the weakness has subsided to a a mild level. Then, after a couple of hours (around 6-7 p.m.), the weakness begins to intensify again.
I am taking 60 mg mestinon every 8 hours. I just finished a month-long regimen of 20 mg of prednisone.
FYI: Did anyone know that dogs and cats can have MG, also? We have a miniature poodle that was diagnosed with MG about 7 years ago. The local vet didn't tell us what he had - all he would tell us is that his esophogus was enlarged and we needed to have him put to sleep. When we refused, he gave us the name and phone number of the animal clinic at UC Davis. We took Benji there and they knew within just a couple of minutes what was wrong with him. They kept him for a week in intensive care and put him on mestinon liquid. Benji was on it for about 4 years then he went into remission and has been in remission ever since.
We mentioned this to the neurologist and asked him if I could have gotten this from Benji but he said that I hadn't. Most neurologists don't even know that dogs can get MG. After reading many of the comments from the support group I realized that there was no way that I could have gotten it from Benjis since several of the symptoms started appearing about 15 years ago, long before we got Benji.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
BEst wishes for peace,
TJ
check out his resume'
I http://www.ucdmc.ucdavis.edu/neurology/faculty/richman.html
I was on predisone (60mg daily) and it causes lots of side effects, so it is possible that this may be your problem or not. Either way you really need to give your neuro a call. Also when I have a question regarding a medicine I am on, I get great info by calling the pharmacist and asking if the meds could cause it. Two options to find out about predisone. But you should not ignore your heart pounding any longer than you already have because MG does not cause this. Good luck to you,
Judy
I typically wake up feeling stronger and by 9-10am am feeling the weakness and symptoms. If I don't sleep well then the weakness is present on waking. There is a long acting mestinon available to take at night and it sounds like you need to ask about this one. In my experience with my neuro, it's better to approach them with problems AND an idea of the solution yourself in order to get action. That's part of why I love this site, you can find others who have been down the same road and found solutions that might work for you too.
Cgreens, thank you for all of your help. I visited the link you posted for Dr. Richman at UC Davis and discussed your suggestion and information with my husband. UC Davis is 3 hours from where we live. We take our poodle up there to the small animal clinic for his MG. My main concern about going up there is the distance to have to travel every time I need to see him or need treatment. My husband agrees with you. He said that if my doctor doesn't respond to my email then he wants me to contact Dr. Richman and make an appointmernt to see him.
Dr. Richman's site has a link to email him as well as a phone number to make appointments. I was thinking that maybe the best thing to do if we choose to see Dr. Richman is to send him an email with a brief description of why I want to see him as well as the daily log I have been keeping describing my daily experiences. I thought this might help him decide whether to take me as a patient.
I did a search on the internet for my doctor and his specialty is Lou Gherig's Disease. There was nothing in his bio that indicated he had any background in MG. He has written parts of several books on the subject.
noticed you just joined today. Welcome!
what meds are you on now? How are you feeling?
Judith
I did just join the other day. I don't feel well at all so looked for some support groups and found this one. I finally go back to the neurologist this week, seems like my appts are so far apart (especially when you feel yucky). I am currently taking a 180 mg mestinon timespan in the morning, a 60 mg mestinon in the afternoon, another 180 mg mestinon timespan at supper time and most days it barely touches the symptoms. I really have trouble with slurred speech and swallowing. I am trying to work part time (as that is what my teaching job was before all this happened) and it is difficult to get through the day with goofy speech and then I get so tired since I can't really eat so have low energy.
Thanks for asking
I'm so glad you found the forum! I hope better times are ahead for us all.
Cathi