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...
Hi all. Its weird posting on here, because I have been reading this blog since last Monday when I had my blood test, hoping and praying that I wouldn't be posting on here today.
This week my tests came back positive for Myasthenia Gravis. I feel very blessed to have been diagnosed early. In June, my voice started going out and I began having troubles swallowing. My doctor referred me to an ENT who chocked it up to silent reflux and put me on Nexium for one month. When it wasn't better, the ENT used the MG words for the first time and referred me to a neurologist. I had an appointment in two days, and my new Neurologist also brought up MG and sent me for blood tests. I was really startled by the double mention. Since then, I was told that my blood tests were positive and to not get too worried that many people live normal lives with this disease. He scheduled a cat scan and has already told me that he will refer me to a surgeon to remove the Thymus. I am a very active and typically strong person, so Im having a hard time not worrying.
After really googling it, I was amazed! (BTW, I know better than to google things, you really hear the worst of everything.) I have been having eye problems since the first of the year, and my ophthalmologist and everyone else I know said "yes, you are getting older". But I can't seem to explain that my focus is weirder than just blurry. I am having trouble tracking and I blink constantly. I NEVER put the two together.
I have been so tired, but we seriously have a LOT going on right now, with one daughter with schizoaffective disorder moving home and another getting married, a recent move to the country, and a growing company who WOULDN'T be tired?
Now, three days later, and I think I am getting paranoid. I have a history of depression and anxiety, but over the years have learned how to identify it and what to do about it. This year I finally succumbed to an antidepressant. I DO NOT want to be a hypochondriac. I am fearful of people thinking that about me. But this afternoon, I had what I have been calling anxiety attacks (I've been getting them frequently this year) and now I am worried that maybe it is also MG related. I get short of breath and feel like I am going down the hill of a roller coaster. Today, I was just short of breath and so tired after being out in the heat for just a little while.
I don't want to attribute EVERYTHING to this disease, and I really want to enjoy the times that I am strong and have a positive attitude. Right now, I am a bit "thrown for a loop".
So today's question is: How do you distinguish core MG weakness from anxiety and fatigue from depression?
Thanks all, and it's nice to meet you!
Leslie
This week my tests came back positive for Myasthenia Gravis. I feel very blessed to have been diagnosed early. In June, my voice started going out and I began having troubles swallowing. My doctor referred me to an ENT who chocked it up to silent reflux and put me on Nexium for one month. When it wasn't better, the ENT used the MG words for the first time and referred me to a neurologist. I had an appointment in two days, and my new Neurologist also brought up MG and sent me for blood tests. I was really startled by the double mention. Since then, I was told that my blood tests were positive and to not get too worried that many people live normal lives with this disease. He scheduled a cat scan and has already told me that he will refer me to a surgeon to remove the Thymus. I am a very active and typically strong person, so Im having a hard time not worrying.
After really googling it, I was amazed! (BTW, I know better than to google things, you really hear the worst of everything.) I have been having eye problems since the first of the year, and my ophthalmologist and everyone else I know said "yes, you are getting older". But I can't seem to explain that my focus is weirder than just blurry. I am having trouble tracking and I blink constantly. I NEVER put the two together.
I have been so tired, but we seriously have a LOT going on right now, with one daughter with schizoaffective disorder moving home and another getting married, a recent move to the country, and a growing company who WOULDN'T be tired?
Now, three days later, and I think I am getting paranoid. I have a history of depression and anxiety, but over the years have learned how to identify it and what to do about it. This year I finally succumbed to an antidepressant. I DO NOT want to be a hypochondriac. I am fearful of people thinking that about me. But this afternoon, I had what I have been calling anxiety attacks (I've been getting them frequently this year) and now I am worried that maybe it is also MG related. I get short of breath and feel like I am going down the hill of a roller coaster. Today, I was just short of breath and so tired after being out in the heat for just a little while.
I don't want to attribute EVERYTHING to this disease, and I really want to enjoy the times that I am strong and have a positive attitude. Right now, I am a bit "thrown for a loop".
So today's question is: How do you distinguish core MG weakness from anxiety and fatigue from depression?
Thanks all, and it's nice to meet you!
Leslie
I do know that heat, stress, emotion and infection will all make the Mg symptoms much worse. Evidently the breathlessness is about vital capacity and can be much worse at night when lying down, I woke up gasping a few weeks ago with muscle spasms in my chest which my neuro says is Mg, as was my trying to swim and gasping and hanging onto the side of the pool after half a length! My worst symptom are tiredness and muscle fatigue, ptosis and double vision, voice control and loss of voice.
I have just come from my neuro appointment and he is now prescribing Cellcept and upped my pyridstomine to 60mg x5 or 6 times a day.
Reading the posts on this site can help, there seems to be a
Lot of people much worse affected them me I know, but it is a hard disease to get your head around!
Pacing oneself and plenty of rest definitely helps as well as avoiding the above mentioned triggers, which sounds like might be difficult for you right now!
I am in the UK, I know this is predominantly a US site but the UK forums seem to be small as the numbers in the UK are low so I am finding this site helpful and informative.
Hope there are replies from more experienced and knowledgable than I for you, but just to say Hi anyway.
Sue
Michele
And Michele, thank you for your reply too. I have xanax, and rarely take it until recently. I still haven't figured out the difference, but I will try your technique and see if it helps me figure it out.
I understand your anxiety over your new diagnosis. MG entered our lives when my teenage son was diagnosed in March. He, too, started with eye problems and that continues to be his main problem. After five months of medication, he had a transsternal thymectomy and did very well. His eyes cleared up immediately following due to the heavy steroids given during surgery, but relapsed when tapering from 40 to 30 mg of Prednisone. He just finished six rounds of IVIG and is having acupuncture treatments which have greatly helped with his energy level.
My best advise is to educate yourself and use this forum for advice. There are a lot of wonderful people here who give great support and comfort. I don't know how I would be here today without it.
Good luck as you move forward towards wellness and keep us posted.
Best,
Maureen
A myasthenic crisis--when we lose the ability to breath-- is the most serious thing we face.
If you ever feel like this and mestinon and rest doesn't turn it around in 30 minutes, you should go to an emergency room. What you are describing is mild, but it can go downhill very fast if you don't rest. I've never had an MG crisis (knock wood) but many here have and can tell you. This hot weather we are having on the East Coast is the pits! Cool breezes to you -- ~joe
I am hoping and praying that the MG goes into remission with the removal of my thymus. At this point, I don't really feel weakness in my arms or legs. My neck has been feeling tired (spasmy) at the end of the day.
Today I went out early in the morning to do a little work on my chicken coop and weeding in my landscaping. When I started feeling hot, I came in and put an ice pack on my neck and watched a little Rachel Ray. I feel pretty good right now and am ready to do my inside computer work through the heat of the day. This is a completely foreign schedule for me as I usually just work physically all day and computer at night.
I told my husband yesterday. "Sometimes God allows things to happen to me and I get all angry like "why me?". But this time I can almost see God saying "slow down, get some rest, ask for help". I need to learn these things and I'm (almost) grateful.
Thank you all. I'm sure I will be here often.
Leslie
PS. I learned how to make homemade butter and mayonnaise on Rachel Ray today. I cant wait to try it!
take your time in this hot weather and be very carefull of being short of breath I have had 2 crisses and they are not fun the last one put me in ICU for 5 days mainly because I waited almost to long to go to the hospital also do not be afraid to take a nap!!
Chuck
We had a great day today with our church group at our house, but these days always require a lot of work. I think I over-did.
I did have a massage today. Do you think that helped or hurt?