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 just diagnosed 3 weeks ago. At 1st I was really relieved. I still am very relieved and excited to start to feel better. I just started on testimony 3x a day. At 1st I felt better. Now I feel like Mestinon is like a morphine drip. I take it, feel relief for a while and then out of nowhere, BOOM, I get hit by a train, repeat cycle. My arms feel like they are going to fall off, my legs feel like they have 20lb weights on them and I feel like a bobble head.
I spoke with my Neuro and she cut my mestinon in half. After reading several of the other posts, I know I'm in for a long journey. I'm trying to educated myself. I know what MG is now and what the textbooks say it is. I see the symptoms they list. I still feel alone. I still feel crazy. I feel like a failure. How did y'all cope.
Before being diagnosed I went through the fear of thinking I was having an aneurism to bells palsy. Then I was diagnosed, so I was relieved that I had a name and path. Like you, I was happy to be on Mestinon and then some new symptoms ruined that and had to readjust. It's stages and readjusting. When I was just hoping to get into a regimen and go about my business, just to have the rug pulled out. Like what you are going through. And that's damn disheartening. When you just want to feel like you have a hold on it. It robs you of your sense of relief.
I thought it was obnoxious to hear people give me advice like, "take it day by day" and all that proverbial cheese. But then I realized it was true and literally the only way my brain was going to be ok accepting I have a life long disease.. Otherwise I just got overwhelmed and depressed. I'd be in moments of denial, confused, wondering how I could "fix" myself, just like your feelings of "failure". Can I get on the most perfect diet and reset this? Mediation, vitamins, chemo, remove my thymus. Willing to do anything holistic to medically aggressive to end this and get back to "normal". All that was a product of my denial and not wanting to come to terms with having a life long disease.
After rattling off a ton of baseless useless fears, my doctor told me to first, breathe, then said that there is no reason you can't have a perfectly normal life. And to not let this consume you. Life is all about constant readjustments it just seems so much more apparent because it's your body. There will be a regiment that will work for you. Yes it's a long journey, but again is there any aspect of life thats not. You'll have your days that this mess will be up in your face, and then I promise you'll have your days were you'll put it in the backseat. I was stuck in bed for two days last week, only to be able to run 5 miles after. It's hard not being able to do what I want when I want, learning to work with the flow of it has helped me feel like its less of life sentence.
Take it in stages, be ok with adjusting, don't assume your worst days is how the rest of your life is going to be. Do exactly what you are doing educate yourself, but even take that in stride (because it can make your brain go crazy too). I think posting on helps with the phycological support of it all which is equally as important as the medical....and here's my last proverbial cheese but is utterly true: you are not alone! It helped me out so much to just to write to you, and clearly there are so many others. It was therapeutic just to share knowing I feel/felt the exact same. Feel free to DM anytime if you need to vent.
I feel your anxiety and have shared it. That initial anxiety is mostly gone these days. But once in a while......
There is a lot of knowledge on this board. I would suggest that you grab a beverage and read as much as you can.
I was diagnosed about 1 1/2 years ago and still trying to deal with it.
It is life changing but usually not life ending.
Good luck -
Scott :-)
What treatments are you considering? Don't wait too long because this can get worse than you can imagine. Please keep us posted. We understand.
TJ
Sorry you have MG, but most folks figure out a treatment plan and get it under control. The first year can be difficult, because by the time we get diagnosed, we are usually far into the disease, and it takes a while for treatment to work.
Mestinon is like an aspirin, most of us take it "as needed." My prescription for it was something like -- take up to 8 pills in 24 hours as needed. At my worst I took a 60mg pill every 3-4 hours. They took about 30 minutes to take effect and lasted 3-4 hours before wearing off.
As TJ said, Mestinon treats symptoms, like aspirin for brain tumor. The cause of MG is our body producing bad antibodies that attack our neuromuscular junction. And although some folks can get by on just Mestinon, most have to add something to cut down the production of the bad antibodies, as in my case, I just kept getting worse until I took prednisone to slow the production.
The good part of MG is that the damage done by the bad antibodies is pretty much completely reversible once the attack is removed. So we can get good functionality under treatment.
I like to think of MG as something like diabetes; a chronic condition that with treatment can be controlled and let us live normally.
About 15% of folks go into remission and don't need medicine for periods of time. About 15% don't respond to normal treatments and struggle to find something that works for them. There are many choices of treatment, from inexpensive and effective prednisone that is good for short term treatment but not good long term, to newer very expensive ones that require some negotiation with our insurance to obtain.
MG is not a death sentence, but most of us do have to figure out a new, but quite tolerable normal, sometimes with some physical limitations.
Good Luck
Russ
Reading your messages brought tears to my eyes and gave me a sense of peace. It's hard explaining to others how and what I feel. I feel like I'm giving excuses for my lack of ability. The great thing is that I have amazing people in my life who see what I can accomplish on a good day so when I'm physically struggling, they don't say anything. They just step in and do.
I know it's just the beginning of my journey. Mentally, I feel, is were my current obstacle is. I'm a director of a childcare facility. I am a caregiver to my 19 year old son who is a complete assist with a brain injury. I'm a wife, mother, Gam Gam and so much more. More than any of that, I'm finding that I'm an over thinker. I'm focusing on what might be instead of what is present at hand. With my other roles, I know how to take it step by step. Why am I struggling with this? Because I'm not in control! Did I mention I'm a control freak? Lol
Thank you for your guidance. I appreciate it more than I can say.
Rae
It is not a good idea to assume you can continue to be the care giver and function normally, especially at the beginning of MG. Most of us take a year or so to get things figured out and to resume a more normal life. And MG tends to get worse before it gets better, often because our doctors are very conservative with initial treatment.
I recommend you begin educating your work area and your family about MG, and make sure they know you may have a difficult first year and an altered future with somewhat less functionality.
I started with just some eye difficulties and within a month was in the hospital trying to breath as I was under-treated with just 3 mestinon pills per day. I got out when they told me to take up to 8 per day as needed, and began prednisone.
I wanted control of my life, and to be a knowledgeable partner in my treatment plans, so read everything I could find online at reputable websites like Mayo Clinic, Webmd, and other university type places I trusted for evidence based treatment.
Then when I sat down with my doctor, I insisted I be part of the planning, have access to all of my tests, and set my own goals for the level of functionality I wanted, and said I was willing to take risks of medication side effects to get my life back. I was 65 and retired, so that made things much easier.
And, my control, was the acceptance by by my neuro, endocrinologist and family doctor that I was to be treated as a partner to whom explanations were required and decisions were to be discussed with my goals in mind.
That worked for me.
However, I can't emphasize enough, you need to immediately begin understanding and modifying the roles of support and work as, if you are like many of us, you will increasingly find it impossible to do. That includes requiring your spouse to take on more; your co-workers to take on more, and assistance in care giving. Over the 8 years I have been active here, I see far too many women coming in with great responsibilities unwilling to understand that the new responsibility that overrides all of the others is to manage your own health. Although we say the long term outlook is good, and many of our normal activities, can be resumed, short term far too often we damage our own health by thinking far too much of others at our own expense.
The other issue is to educate all of those around you who will say, "but you look fine..." when you tell them about MG.
They need to be clearly aware of the possible and likely problems that will arise with MG and its treatment. I explained it something like -- my immune system has turned on me and attacked the connection from my brain to my muscles preventing them from working. It is somewhat like muscular dystrophy, somewhat like ALS, but with treatment I can live a mostly normal life. BUT, I will be limited for some time into the future on my physical ability, strength and functioning. (With me I even lost my ability to type more than a sentence at a time without rest).
So tell others, explain to them, learn all you can, get involved, and shed or at least share responsibilities or you, like far to many others, will crash and burn along the way.
Rather harsh, but necessary advice!
Good Luck
Russ
My Neuro is a bit more conservative but I also partake in discussions about my treatment.
Mestinon, Prednisdone,Imuran and IVIGs every 6 weeks.
I have improved since last year but am no where near Normal.
You are certainly wearing many hats and that probably causes you some stress. Stress is one of our enemies. Try to step back some and let others help.
I know it's difficult to step back, as it often seems that I alone know how to do the things that need to get done and it's easier to do it myself than ask for help that, when completed, if it is not up to my standards.
Exerting too much energy may result in a crisis.
If you do have MG you must learn to live a somewhat different life.
Good Luck,
Scott
to start i would suggest that we all dont make all what mg. seems to be, yes i do agree that is a very deceptive desease, but after 11yrs of it and thru all the researchthru the net ect.. the nost ameed thing that i discover that actualy mg. is the oldest neurolgical desease.
it was discovered in 15 25 then registered on the books by an englishman in 1785,
but nothing much has been done, since it is very clear that generally speaking we do not die from mg, but from respiratory complications, even do mg is mentioned.
fro what i have seen thru the years, and as i have explained manny times. we can control it and leave a pretty good and enjoyable life.
i have learned the hard way, what is to be done, but i will explain few things does it is understood.
we had a daughter with juvenil diabetis, whom after 45 yrs, died of pancreatic cancer,after having multiples problems, in 2012, my wife had cancer 3, in 2014
whom now is cancer free for the last 7yrs., but the accumulation of life twists
put me into a downworth spiral that allmost costed my life in 2017.
this was do to my unabilty to control my emotions and stress, so i will again refrease the importance to LEARN TO CONTROL YOUR STREESS, once you accomplish this you will be to see clearly the path that you will follow, controling also that when in your activities you SEEMS TO GET TIRED, please that a break, nothing is more important than those 2 majors acconplishments..
as i mentioned before these little things will help you so greatly, that your mind will be able to thingh more clearly, and you will be able to manage your meds in a more relaxed clear way. so to lower your mestidone, prednisone and others.
just do not feel sad, wondering, we all are in the same boat, and we are here for each other
best of luck
Andre
Kept my head straight and preserved strength.
You haven't mentioned your treatment plan. From the sounds of things, you need treatment. This can progress and get worse. To push this back, I got a round of IVIG. That was 5 infusions going every other day. It is based on your weight. This is what gave me back my life as I accepted my long term treatment, a steroid sparing agent in Cellcept. No matter what you do, believe it will work because there are many treatments out there. I reccomend Cellcept as it is the safest, with least side effects and if it works, you will be rewarded. Patience with it because it isn't quick. Can take several months to be effective. After a year you would know for sure. Again, there are many treatments so work with your doctor and believe in your doctor unless you find good reason not to.
Please let the group know how things are going.
Best wishes for peace,
TJ
There are many IVIG schedules out there. All IVIG treatments are not the same.
(I do IVIGs, 3 days in a row, every 6 weeks as part of my treatment plan.)
:-)
Scott
Things that I have been able to associate with my diagnosis that I never had an answer for before are intense abdominal pain that couldn't be medically explained, tremors, clumsiness, loss of balance, increased motion sickness, frequent unexplained coughing, choking on water and my own saliva, constant fatigue.
I've been going to my GP for the last 2 years with unexplainable symptoms. I've had several MRIs, brain scans, cat scans, ultra sounds. They sent me to so many different specialists. It wasn't until October of 2020 that during v my annual eye exam that the eye dr noticed a difference in my eyes from last year and pressed the issue of a Neuro referral. It took 4 months to get a referral. Once I went in, it took her about 15-30 minutes to diagnose me. She just didn't know what treatment to start with other than mestinon until all my blood work came in. I can only assume that everything takes for ever in Louisiana. I've just been hoping and praying I stay good until my appt.