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...
Hello everyone,
I am brand new here. The reason I joined this group is because my husband is currently in the hospital and it is almost certain that he has myasthenia gravis. He has been experiencing a persistent headache, numbness/tingling on the right side of his face, blurred vision, significant fatigue, and some eyelid drooping. He had an MRI of his brain and it showed some intracranial inflammation, so they have started him on a 3-day course of IV prednsione. His lab work is strongly suggesting myasthenia gravis, but he is having a temporal artery biopsy on Wednesday just to confirm the diagnosis. He is also seeing an ophthalmology specialist tomorrow. Both my husband and I work in healthcare and we are quite knowledgeable, but this is brand new territory to us. We've both heard of this condition before, but we didn't know a whole lot about it. Obviously, my husband is terrified and so am I. I just want him to be okay. We are normally a very active couple, but he has been very fatigued and has had extremely low energy for quite a while now, so at least now we know why and we're getting some much needed answers. I am hoping that someone who has experience with this condition can offer some insight as to what to expect going forward with this condition. Will my husband ever be able to live a "normal" life again? Is there any hope? Is there anything my husband can do as far as altering his lifestyle to help manage this condition? This is so new to us and we have literally no idea what to expect.
I (we) greatly appreciate any insight, advice, and reassurance that can be provided during this slightly scary time!
I am approaching my 2 year anniversary with this disease/condition. One and a half in treatment.
When MG hit me we were full-timing in our 42' Foretravel diesel pusher located at an RV park in Arizona. We were fairly active riding our bikes 3 to 4 times a week 15 to 24 miles at a time. Today, I am fatigued taking short walks and even taking a shower. These days I do some light yard work but am limited to 5 to 10 mins at a time before I must sit and rest. I think I had been fatigued for some time but chalked that up to Old Age - 68 at the time. It was double vision that finally drove me to seek help. Went through a bunch of tests in AZ, including an Ophthalmologist, but could not get to a Neurologist for diagnosis. My wife drove our motorhome from AZ to Houston hoping we could get help. I had contacted the top 3 MG Neuros in the Houston area. I checked-in with my VA PCP in Houston, and she got me an appointment the next week with a VA Neuro and have been in treatment with him since then.
Today my double vision is mostly gone but am still very fatigued most days. Have some breathing and swallowing issues but have never gone into Crisis. That's good.
MG is a condition/disease that effects people differently. Today there is no cure. I consider myself fortunate that I am able to move around pretty good most times, on foot. I stopped driving when I got double vision and hope that I will be able to again drive in the near future. Many here drive.
Do I wish that I had not gotten MG? Ofcourse, but am trying to make today the best that I can. I should eat less and get more exercise but am fortunate that I have a wonderful wife that takes great care of me and try to take good care of her.
We are fortunate as things could be much worse.
Your life has already changed. The next question may be where can you get the best treatment and what will be the best environment for you both.
We hope for remission but realize that the percentage of folks that do go into remission is small and even remission may not last forever.
Good luck to you.
-Grab a cup of your favorite beverage, get comfy and read - read - read. Lot's of good people here with much more experience than I.
- I am OK, :-)
Scott
Welcome to the group! If your husband has MG, we do have a lot of experience with it and can help him with questions about what is happening.
I did a lot of reading when I got MG and found the Myasthenia Gravis Foundation excellent. https://myasthenia.org/
MG is treatable. It is an auto-immune disease and so treatment begins with two types of treatment. With MG, the neuro muscular junction is attacked, blocked and destroyed. The good part is that with the attack suppressed, the junction can rapidly repair itself, so we are never really much more than a few weeks away from much improvement with the right treatment.
The first treatment most of us start with:
Mestinon -- pyridostigmine, which can greatly improve the symptoms and essentially works only for MG patients. You take a pill, in about 30 minutes much improvement and in about 3-4 hours it wears off. Sort of like an aspirin for a headache. It treats symptoms and not cause. It has side effects that can be distressing, but for those of us with MG it can make the difference of being active or not. Some patients get by on just mestinon, but most of us need more. However, it does not work for everyone and in some types of MG, doesn't do much. For ACHR+ (blood test) it is generally does work.
The usual second treatment is something to suppress our immune system or alter it. In an emergency when we are really bad, we may get IVIG (an infusion of blood products) or PLEX (a filtering of blood). Both are outrageously expensive (20,000 or so per treatment), generally need to be repeated every few weeks, and are more of a last resort treatment as insurance companies balk at paying for them without trying other less expensive treatments. However they can give really rapid improvement, and when we are having much trouble, can be wonderful.
Many of us start on prednisone as a way to slow down the production of the bad antibodies that are doing the damage. I went from in the hospital having trouble breathing to pretty decent functioning with lots of mestinon and prednisone. My really bad functioning was the first 5 months, and then treatment worked and I got my life back. Prednisone has been used in MG for decades and in the past was pretty much the standard treatment, and often is now too. For me it was reasonably fast to get MG under control in a few months.
It has side effects so rarely do we stay on it long term as there are other slower to start immune system drugs that seem to be much less problematic.
There are a few variations of MG, so there are few blood tests for different antibodies. If they are negative, then an emg type of test to see if one's muscles tire after repetitive stimulation more rapidly than a normal person. Or maybe the SFEMG test will be done earlier.
MG generally is not diagnosed until we are quite far along into the disease and have some very dramatic issues. So we start with many problems. Then we get treatment and often the first year is trying to get it under control and then working out a long term treatment that works for us. The first year is a lot of difficulty as we try to figure out the longer term strategy.
About 85% of folks get that figured out and do well with treatment. There are 15% (roughly) who are "refractory" meaning that the normal treatments are not effective, so have to explore alternatives to the normal treatments. There are several, but tend to be expensive.
In the longterm, most of us we live as long, we live decent lives, but are somewhat like diabetics in that we have a chronic but treatable condition.
Good Luck
Russ
How is your Hubby doing?
Scott
Good luck!
Bob
TJ
I am sorry to hear that your husband might have MG. If his muscles recover after rest or a nights sleep before the symptoms come back, then it probably is MG, I would think..
I am getting closer to 40, male and have had MG for 6 years. The treatment that is available allows one to almost live a full life, at least for me. But sadly jogging and cardio are out for me now. Otherwise all is well. There are some issues with prednisone side effects, anger, short temper and insomnia, but those are necessary evil's compared to not taking it, in my opinion. My wife said she would like a support group for herself :>
It is hard at times, but there is a lot to be hopeful and thankful for. Thankful for the achievements that make our lives better, and hopeful for the new ones. Last week at a regional conference a speaker said their is good chance there will be a treatment in 8-10 years or less that will eliminate the need for steroids.
I wish you and your husband all the Best,
Don't stress, and tell him that too, this is key to living a better life with MG
olaf