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 everybody!
I just want to start off saying that I'm glad there is a place where people can come together and talk about MG.
I am in the midst of being diagnosed, but I have very classic symptoms starting with an eye disturbance that has progressed into double vision, ptosis, tiredness and general muscle weakness within a month.
I have very young children (2 and 5 months old) and I can't pretend I'm not scared, but I want to be brave for my family. I know the next year or two may be the worst with diagnosis and drugs. But what I'm really worried about is breathing and swallowing issues (crises).
How many of you have had one and how did you know it was coming? What are the important things to say to drs and paramedics?
I also work in fitness and I'm trying to wrap my head around the best way to tell my boss and continue in my persuits. How many of you have gone into remission?
Thank you all so much for being so brave and sharing your condition.
Sorry to hear you may have MG. It is a scary diagnosis, but not as bad as many others as it is treatable.
Most folks who get MG have a difficult initial time as diagnosis is slow, doctors seem to be slow to get treatment underway, and by the time we have symptoms, we are usually pretty far into the disease, and so the first 6-months to year are often the worst.
However, treatment does work, most of us do get back to being almost normal functional, although we have to have ongoing immune suppression, something that does change our lives. Although most folks do well with treatment, there are some that have ongoing and very serious problems. There are different flavors of MG, and treatment is different and prognosis too.
About 15-20% of folks with MG get remissions of varying lengths, from a few months to decades. Most of us get what we call medical remission-- with treatment most of our MG symptoms go away, and our worries are related to the treatment medications.
Treatment usually starts with Mestinon (pyridostigmine), which acts to make things temporarily better (take a pill and 30 minutes later you feel better and it lasts for about 3-4 hours before wearing off). Mestinon messes with our digestion, so it is taken with food, and I used Imodium too at my doctor's suggestion with the morning dose. It has other irritating side effects, but for most of us is so helpful we learn to cope.
We also get something to suppress our immune system from producing the bad antibodies that attack our own nerve to muscle connection (the neuromuscular junction). Most common is we start with prednisone, although if our condition is serious, we may get IVIG infusions or PLEX (blood filtering). IVIG and PLEX are very expensive ($20,000 per treatment) last a month or so, and are often seen by insurance companies as an emergency treatment for crisis.
MG is quite rare, so you have to not only educate yourself, but your family doctor and your family. You really need to find a neurologist who is experienced in treating folks with MG. Unless you go to a large medical center for your regular treatment, you have to assume the doctors are not aware of MG problems and that includes ERs.
We get a "crisis," (severe breathing problems), when MG is untreated or undertreated or early in treatment when we get a cold, flu or other added complication to our already compromised breathing muscles. I had my only one early on when my doctor started me on medications, and, as do most neuros at the beginning, under treat us. I spent a few days in the hospital when all I really needed was about twice as much Mestinon (I started with three 60mg pills per day and really needed about twice that to function until prednisone worked a few months later).
We can't count on remission. It does happen, and I am one of the examples. I had one bad year, then went into remission and have now been 4 years in remission without medicine. My treatment was lots of mestinon as needed (up to 8 pills a day), high doses of prednisone (60mg/day) and 4-5 months to get the MG symptoms under control (actually mostly gone), then stopped mestinon as it no longer helped, and tapered prednisone over 6 months to zero and MG didn't return. I do expect it back, but as I am 70 (MG favors older men and younger women), I may be lucky and it won't come back
One of the ways to find out information from this forum is to search it. The search that dailystrength provides is limited -- so if you want to find out discussions from the past 10 years on any topic do a google site search. I type exactly this line into my browser search for remission (example). You can't just click on the link shown, you have to add the search words then site:webaddress
remission myasthenia site:www.dailystrength.org
I think the most useful thing I did in my first year was search out an experienced neurologist who specialized in MG and then read everything about it from reputable sites. I like the Myasthenia Gravis Foundation as a starting point.
http://www.myasthenia.org/
Finally, you really have to work on your family to understand what is happening. We look OK, and people don't really know about MG, so too often judge by our normal appearance, and expect us to be normal (or blame us for being lazy...). I explain that MG is somewhat like MS, a chronic disease that makes us weak and requires medicine that also makes our life difficult.
IN THE FIRST YEAR, YOU SHOULD NOT TRY TO MAINTAIN YOUR NORMAL ACTIVITIES--BUT YOU NEED TO IMMEDIATELY SET THE TONE FOR YOUR FAMILY AND GET SUPPORT!!!!! If you try to do everything, you will collapse and you will be discouraged. Get support; figure out how to get others to help with children, get them as independent in their own care as possible, get your spouse to take on more responsibility and work as you won't be able to. This will likely change after treatment begins to work -- I think it took me 6 months to get to feel like I could do regular things again. You will surely crash and burn if you don't get support.
I had just had a knee replacement when I got diagnosed with MG, and the cane gave folks the clue that I was not functioning normally. I kept using it while MG was at its worst as it helped others realize I was functioning much worse than what my appearance showed. You have to get past the "you're looking good" judgment as to what you can do.
Good Luck
Russ
I live in canada so I'm not worried about health care costs so much.
Right now I don't think I'll be leaving work, just cutting back until I can get some treatment. I can reduce the fitness workload if need be and move to a more sit down role.
Again, thank you for your insight. I hope to start a therapy soon!
I was diagnosed in early 2015,although in retrospect I now believe it revealed itself on Christmas Day 2004.
I am now only beginning to accept I have this condition, although at one time " I was as fit as a butchers dog"
I am an Englishman from Shakspeare Country
Just look after yourself and of course the kids
One day they will find a cure, it may not be in my life time.
Peace,Love,Soul
Throstle53
Sending prayers to you as this has been a difficult year for me to adjust. I pray for your strength and ask for help when it comes to caring for your children, We have good days and bad days with MG please don't be afraid to as for assistance. I've had to make adjustments in my career, I don't exercise anymore at least not until I'm stable and Dr. has given her approval. I don't drive no further than 5 miles to the store as leg weakness comes and goes. It been a scary journey, but I'm making it and so will you. God Bless !!!
I can still exercise and it has been helping me to curb an uncontrollable side effect: anxiety.
I have lots of questions and I know this condition effects us all differently but I'd like to know more everyday, so I can be calm and ready for what may come!
Thank you for sharing! I am new at this also. Diagnosed 3 weeks ago and coming to terms with a lot!!! A good neurologist is very important. I am still waiting and having work up tests.
One thing I have worked out from reading soooo much online ... keep a diary of you symptoms day to day. Write down medications you are started on. Diarise side effects. All information is relevant. Very important to have good communication with your neurologist!
A little background. My symptoms started in May 2017. Droopy right eye. I was treated for something else... then had follow up with a neurologist who suggested MG. Things progressed quite quickly with blurred vision, swallowing difficult, upper body weakness, being off balance occasionally. All my symptoms tend to be worse in afternoon! And later.
I have been started on Prednisone and Pyridostigmine ( Mestinon). Droopy eye gone currently (unless sick with flu!), I still have blurred vision off and on. Beware getting suddenly ill! Weakness still there towards end of day if not having a rest... all a work in progress.
Keep reading ... ask for help, when tired rest! (Hard with kids!). Give family and friends fact sheets or send them links to read.
Hang in there ... strength is in information and being proactive. Big hug!