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...
Respiratory collapse and aspiration are the most serious acute problems we face. Although we are all different and have different medications and progress of our problems, almost all of us seem to have some degree of respiratory compromise.
The links grooup is a good place to go to look up common problems and Bruce has started one regarding our discussion about the single breath test and I have added a link to a publication about outcome with respiratory problems.
When you are new to MG, and sometimes when we should know better, we tend to discount the seriousness of our symptoms. This is true especially if we are undiagnosed, seronegative, or have a neurologist who seems unsure of the seriousness (and sometimes the reality) of our problems.
Please ask your questions here.
Tell us what sort of tests can best pick up problems when you have myasthenia.
Any breathing "exercises" that are helpful.
And a few examples from those who have experienced myasthenic crisis (I will try to find Curt's if he doesn't reply expeditiously) would be helpful as well. What happened that led to the crisis if you know? Or what was done that prevented one?
Thanks, b.
The links grooup is a good place to go to look up common problems and Bruce has started one regarding our discussion about the single breath test and I have added a link to a publication about outcome with respiratory problems.
When you are new to MG, and sometimes when we should know better, we tend to discount the seriousness of our symptoms. This is true especially if we are undiagnosed, seronegative, or have a neurologist who seems unsure of the seriousness (and sometimes the reality) of our problems.
Please ask your questions here.
Tell us what sort of tests can best pick up problems when you have myasthenia.
Any breathing "exercises" that are helpful.
And a few examples from those who have experienced myasthenic crisis (I will try to find Curt's if he doesn't reply expeditiously) would be helpful as well. What happened that led to the crisis if you know? Or what was done that prevented one?
Thanks, b.
Everyone needs to exercise, but if they are concerned about a crisis, how much are they going to get etc etc etc?
There may be a line for me to cross, and if I do, it could mean a crisis. I hope I never find that line to cross.
The thing that throws me is how one day I will really feel out of breath, shallow and short of breath with hardly any exertion, and days like today that it has been 103 outside and I went to two stores and ran two other errands and am sooo tired, but my breathing seems much more normal.
There are times when I would bet my life that this is MG, and other days when I feel that I must have some real phsycological problem that is convincing me that anything is wrong. Today, I tripped over my own feet behind the dog.
Fell and skinned my elbow and hand and bumped one knee. I was sooo angry. Soo angry that I felt helpless and old and I hate it. Soo many things that I cannot do. I look perfectly normal, but I cannot do so many things that I used to do.
And the thing that bites is that I can't really groan about them, not to my family because to them I am just getting a little older and out of shape.
I notice my breathing. I never used to think about it, but now, if I notice my breathing it just means to me that I am not breathing as well as I should.
So many things I didn't used to think about, balance, strenghth, I just took them for granted. How can a dr. not see that there is something weird about me.
I am going to start asking them to really look at me. Move around for them and see if they are paying attention to the everyday things that we do.
I think that they should ask us to try to climb a step stool, try to screw in a lightglobe, carry a stack of files up some stairs, bend over to tie our shoes, walk around the lobby a few times, just things we would do at home or in our daily lives.
Hold a blow dryer and do their hair, hold a duster to dust the fan lights. How hard would it be to substitute some other things in their office for what we do at home. LOL Sorry, had to do it, VENT!
I had my 1st MG Crisis back in May. I had been having SOB for eight months. I had several appointments with my doctor, several test to rule out other contributing factors, i.e. COPD or cardiac. We ruled out pulmonary and did find I had cardiomyopthy and was but on meds. Doctor's felt my SOB was due to the cardiomyopthy and MG.
However, my SOB continued to get worse. We did 5 days of IVIG, which had zero benefit. My doctor then put me in the hospital and started plex. My SOB continued to get worse even after two days of plex. However my pulmonary test, blood gases and neuro exams did not raise the red flag, meaning I stayed on the floor and was not transfer to the ICU.
The morning I had a near respiratory arrest I knew I was in severe distress. My respiratory muscles were so weak I just felt I could at any minute stop breathing. I was not grasping for air, my breathing was just very swallow. I was using my CPAP at the time.
The effort of transferring from my bed to a wheelchair was just too much effort for me. As soon as sat in the wheelchair I blacked out and breathing became very slow. I was lucky because my doctors had decided to come by to check on me when I blacked out. I woke up being bagged (manual method breathing for you) and doctors talking about putting me on ventilor.
Lucking I recovered enough and my blood gasses were NOT critical, so I was able to use my CPAP and avoided being placed on a ventilator. I was put in ICU, plex was stopped and I was given 1 gm of Sodium Medol for three days.
My crisis was determined to be primary MG related. However the doctors determined a major contributing factor was my Methotrexate. Although Methotrexate is one of the several immosuppresants used for MG, it does have some serious side effects, including causing SOB, especially if you have COPD.
What did I learn from my MG Crisis and could anything been done to avoid the crisis. Next time I would; keep a better journal, better communications with my doctors, pushed for better communication between my doctors and ask the question are the problems due to any of the meds Im taking.
Once you have crisis you learn very quickly to take this disease more seriously. Always remember to be your strongest advocate and keep MG from progressing.
Bruce
For you new guys and girls the crisis comes on real fast. You might have problems for several days, then down hill real fast.
Will
Last night, I had some sort of setback with my breathing where all of sudden I felt slightly weird and concerned about finding my rescue inhaler. My breathing felt weaker, my body felt weaker and my speech felt like my tongue was in the way or something.
My husband printed out the emergency personnel handout in case we needed to go to the ER, and that was comforting. I also found and used my rescue inhaler and that seemed to help. I will keep it close by from now on.
Otherwise, I lay quietly in my bed with my little dog and watched videos and read info from the links group. I also came up with the idea of putting my web cam on and just leaving it on while I was reading and talking with my husband. As it turned out, I completely forgot about it.
This morning, I watched the video and the obvious weakness in my face, my voice, my speech, my eyes and my breathing was pretty startling. I had not pictured it being that bad.
I am going to try to make it to see my IFS therapist this morning because I called her too late to cancel the appointment. If I can't drive myself home, my husband will leave work to pick me up. My voice is weak and my body is so weak, I am not sure if it is even worth it. I am really concerned about pushing myself in any way that is not absolutely necessary. Maybe I will skip it and just take a loss on the $180 for the session. (Yep... that's what it costs, and that is what it is WORTH!!! :-) )
I can imagine all of you telling me to forget the appointment and REST... and I know you are right. I will leave her a message.
I had a blast yesterday on DS... reading, writing, feeling supported, validated and appreciated (thank you RestorativePose!!!)... and feeling so happy to be part of all. But, unfortunately, I think I did too much. So today, I am going to TRY to just read and watch TV so I don't get myself into more trouble. Please don't worry about me, okay? The nearest ER is less than a mile away!
Can somebody please tell me where I can see that breathing video? Also, my husband uses a b-pap at night. I know that I am not supposed to use it because the data from it is wirelessly sent to technicians... but in an emergency, could the b-pap potentially be useful in holding me over until help arrived?
Love and thanks to all!
Rosie Soaring
Rosie Sagging... lol
I have had numerous episodes of crisis in my 12 years since diagnosis.
Not all the crises are exactly the same but if I think about what causes them most frequently for me it has been infection, stress, sudden increases or decreases in prednisone dosage and also me not listening to my body signalling me to slow down. Sometimes there doesn't seem to be any obvious reason even.
Usually I deteriorate over a few days and then suddenly completely decompensate and can go from walking to almost complete paralysis and respiratory failure within hours. It is really scary and so I have had to become more aware of danger signs. For me I know to immediately get help when my voice becomes a whisper, when I become more breathless and my neck gets very weak and when it becomes difficult to lift my arms out to the side. I have had this discussion with my specialist neurologist and she says that any of these signs together with increasing difficulty swallowing are all indicative of impending crisis. These observations have certainly helped me to anticipate crises and get help on time.
The actual respiratory crisis begins as an increased awareness of my breathing and a feeling of getting too little air. I am usually unable to lie down and feel as if someone is sitting on my chest. I become too tired to speak. I also become unable to cough because of weakness and so my chest starts becoming very congested. I can become very anxious and also begin to feel disorientated dizzy and clammy. I also tend to get severe muscle cramps when I am in crisis.
Rosie to answer your question, my BIPAP ventilator has most certainly saved my life on numerous occassions and without it I would have been intubated and ventilated alot more times than I have been. The machine gives you a chance for your respiratory muscles to rest whilst at the same time getting air into your lungs under pressure thereby avoiding atelectasis or lung collapse. I certainly wouldn't suggest you use it instead of getting help but it would help in an emergency. Perhaps you should chat to a respiratory therapist about what kind of pressures would be appropriate for someone your size and weight so that if you do need to use it you can do so without harming yourself. Is your hubby able to alter the settings himself?
Thinking about things that may help divert a crisis, well for me what has really helped me is getting to know my body and listening to it so that I get help before it's too late. PLEX and appropriate antibiotic therapy has helped me abort a crisis and I have also found that chest physiotherapy with assisted coughing has helped to keep my lungs clear and free from infection.
Strength to you all!
Ange
Last night, I succumbed to the temptation to try the bipap and stayed on it for an hour. In that short time, I felt so much better that I unloaded and loaded the dishwasher and sustained about an hour conversation where I was helping someone with a project and doing most of the talking. A 10 minute conversation would have been much more reasonable.
This morning, I felt refreshed and noticed I was walking rather briskly when I took the dogs out. The next time I took them out, I felt proud and joyful...celebratory, even! Then I found myself a little bit out of breath and came to my senses about practicing moderation.
Now, my voice is quavering again... which I had just started noticing on Wed night. My arms are rubbery from typing and I am aware of my heartbeat. I am learning how to listen to my body in terms of fatigue, so I know it is time to put down the laptop and rest. Should I be getting any additional message from the quavering voice and noticeable heart beat?
Yesterday the medical director of my health care facility (who sees patients part time), to explain my current health situation, ask for a new PCP (because the one and see if there is anything I can do while I am waiting to see her in a week, waiting to get a full time PCP and waiting for my neuro eval at the end of August. I am trying to be patient and hang in there, but not knowing for sure why I am vulnerable to acute exacerbations, or how close I am to having another one... and realizing that most mmy someone who understands MG
I was trying to say that I think something has happened to my PCP and that the medical director, who I am scheduled to meet with is the closest thing I have right now to a PCP and she has not been involved with my care since some time last fall. Last night, I wrote her a concise update of my recent history, symptoms and concerns, along with some MG info and a link to Myasthenia.com. Waiting 7 weeks to be evaluated and diagnosed, having no MD directly involved in my care and feeling vulnerable to another exacerbation is feeling a bit precarious to me right now.
I did receive a call from a BCBS nurse last week who spent a lot of time taking an accurate history. She told me I need to have a PCP capable of coordinating my care ASAP and that, failing that, I am eligible for BCBS Case Management (with her). So, if it becomes necessary, I could ask the BCBS nurse for help.
I apologize for meandering off topic here! My main concern is my breathing and how to deal with it while in limbo.
Thanks!
Rosie
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/12540844-ghosts-and-horror
http://www.magictortoise.com/breathing.htm
I am sure others have been taught less esoteric breathing exercises :-) b.
From your description it is not clear if you were diagnosed with sleep apnea or found to have significant respiratory muscle weakness.
The management of those disorders is different.
Most patients with sleep apnea do very well with a CPAP.
Patients with respiratory muscle weakness should use a Bipap not CPAP.
This is because:
Normally when we breath we use our muscles to create a negative pressure in our chest wall. This leads to air flowing into the lungs.
We then exhale the air passively by relaxing our muscles.
We exhale air actively only when we blow against resistance (such as happens when you inflate a balloon).
Most respirators are based on positive airway pressure. this means that as opposed to the normal situation in which we create a negative pressure and then air flows in, the machine creates a higher pressure and pushes the air into our lungs.
This is why it is somewhat uncomfortable and requires adjustment.
CPAP=continous positive airway pressure.
It is not a respirator. what it does is create a constant pressure which keeps the airways open. But, it also requires that you actively exhale (as opposed to the normal passive exhalation).
This means that you have to use your respiratory muscles during the entire breathing cycle. (as opposed to normal breathing).
It is the preferred mode of treatment for patients with sleep apnea.
Bipap creates cycles of higher and lower pressures. Some even have a mode in which you have to do no breathing efforts of your own. (so, are basically just like mechanical ventilation with a tube, only without having to insert an endotracheal tube and using a face mask instead). Some are very sensitive and can detect very shallow breathing efforts.
It is not surprising that someone with significant respiratory muscle weakness will not be able to adjust to a CPAP.
Most patients can do quite well with a well-adjusted Bipap. This can be used during the night or during the day if required.
I think it is important that you discuss your difficulties with the CPAP with your respiratory physicians.