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...
Good day -
My name is Scott, a 68yo male. We have been living Full-time in our 42' Foretravel Motor home for the past 7 years, traveling around the US seeing cool things and spending time with great people. My wife, a nine year Ovarian/Uteran cancer survivor, found this website and suggested I reach out.
I have been reading a number of posts and am encouraged that there are so many that have been successfully dealing with this disease/disorder. Am also a bit discouraged as I have not found any one with the same progression that I have experiencedI will probably have this thing for a long time. I understand that this MG thing attacks different folks differently.
Started by noticing my lips seemed numb and/or loss of muscle control the last week of Feb. 2019. Then came double vision. After 3 ER visits, probably due to Flairs, a couple of visits with my PCP, an MRI and CT scan and a couple of referral visits to an Opthmologist, it was determined that a referral to a Neuro. was in order. I also have Peripherial Neuropathy in both feet and extending up my left leg to my hip. A bit of eyelid droop but no real swallowing problems.
The second week of July I got into see a Neuro, lots more blood tests and turned out I was AChR positive. Started on Mestonin, 60mg - 3 times a day and now a 180mg at night. Just had my first IVIG. Second one in two weeks. This week seeing my Neuro again and also having an EMG and chest CT. Am experiencing some speech problems, general fatigue and really sensitive to heat. We are in Houston - daytime highs are 94 to 102F daily. ARGH. Also high humidity.
I guess I am lucky as I am swallowing and walking around pretty good. No crisis yet.
I keep waiting for either the Mestonin or IVIG to flip the switch and return my life to me. Guess that that will probably NOT happen. I also realize that it will take some time for us to find the right meds to control this thing and that we are just beginning this adventure.
I consider myself fortunate as some here have/had gone years between the first symtoms and their diagnosis. It only took us about 6 months.
I wish.....I knew what to do.
Hard to keep a positive attitude.
Hopeful........
First 'Spellcheck' that's the easy one. I use 'Grammarly' it's free and it works wherever and with whatever program you use - highly recommended.
The MG journey is a different matter. You're right to say it tends to be different for most of us. However, most of us manage to reach a good place. You're on the way now that you've been diagnosed, you just need a plan. MG tends to come on slowly with varying symptoms, as time passes the production of negative antibodies seems to increase exponentially and more and more of our muscle junctions get damaged, certainly more than can be replaced naturally. The treatment for MG is to suppress the immune system and Prednisone is normally the first choice, simply because it is relatively fast-acting. If not quick enough then IVIG can and is used to stabilise things. Probably a good time to add that Mestinon is not a treatment as such for MG. It has no effect on the suppression of the immune system, nor does it reduce the number of negative antibodies attacking the muscle junctions. What it does do is allow more time for the muscle junctions to operate and in some ways mask the effect of MG, In that sense a bit like taking an Aspirin for a headache - it might help for a short time, but it doesn't fix anything.
Obviously, early days, as I said you need a plan to suppress your immune system longterm. That requires a good Neurologist that you are able to trust, talk things through. The journey may well be in the region of twelve months and it can be unpleasant (you've been warned) BUT, it does get better and I lead a perfectly normal life as do most others.
Hope that helps.
Peter
I started getting double vision, went to see about glasses and was referred to an Emergency department who in turn referred me to an Opthamologist.
He ordered a C.A,T. scan and a consult with another Eye Clinic.
This has been a six week journey, thus far and I'm waiting to hear and see what's next. This condition is [progressing] if that is the word to describe getting worse. The dizziness is over-whelming, I am afraid to walk as I may fall.
I am alive but don't feel like it and concluding these are the initial feelings of developing MG. I continue my journey.
Paul
Thank-you for your thought
I was fortunate. Between the time of my first symptoms in Feb of 2019 and mid-July, when I was diagnosed, was a very strange time for me. I knew something was wrong but couldn't get the medical society to move forward to diagnose. First I had sinus infection, then a micro-stroke, then it was a virus and then it was shrugging shoulders. I did get a referral to an Ophthalmologist and he suggested that I see a Neuro and MG. From there we saw a Neuro and after numerous tests was finally diagnosed.
The waiting is hard.
Still early in my treatment path I am still not seeing much improvement but am hopeful that things will get better.
We discussed with the Neuro last week about a more aggressive treatment approach but have decided to follow his path for a couple of more IVIGs and Mestonin to see what happensl
The waiting is hard. I try to stay cool and take it easy but often feel weak and fatigued. Some days are better than others but I still think that I am fortunate in that my symptoms are minor compared to others.
Still have double vision but would rather deal with that than the patch.
Good luck......
My diagnosis was somewhat similar in that I went to the eye doctor for both double vision and eyelid drooping. He diagnosed MG as likely the cause, ordered the blood test which was positive and then I started the wait to see a neuro as I got steadily worse -- breathing, chewing, even typing became difficult.
Initially I was put on Mestion 3x a day when I needed about twice that much, as I found out when I was hospitalized for breathing difficulty. With 6-8 mestinon per day, I could function and in a few months on prednisone was almost back to normal functioning, actually better I had been for what was likely undiagnosed low-level MG all along.
I was 65 when diagnosed I had a pretty difficult first 6 months, but prednisone/mestinon treatment worked for me. I too was offered IVIG, but at the time was helping my wife through stage 4 cancer treatments (she made it OK), and I couldn't see spending several days a month in the hospital with my own treatment when the doctor said that prednisone would work OK too if I was patient for a few months and took lots of mestinon. The high dose prednisone and mestinon made my job as her caretaker, chauffeur, go OK as her year of radiation, chemo and surgery brought her near death several times.
We all have our own goals, problems, variations of MG, and so each of us has to chart our own path through it, and having a very good experienced neurologist that we can talk to and connect too easily is critical. My neuro -- through Mayo Clinic, Rochester, MN, used the Mayo messaging system for patient to doctor contact-- I could send a note by computer and get a response in 24 hours. That let me do most of my medicine changes without having to wait for hard to get appointments.
I read everything I could find on MG from reputable web sites (major clinics like Mayo and Cleveland, the MG organizations etc.). I wanted to be able to participate knowledgeably in my treatment, and understand the choices ahead with a likely life-long condition.
I had a different path through MG than most folks. After a year of treatment and tapering prednisone I found I was in drug free remission -- that was in 2013. I have remained in remission since.
I think, with no real scientific evidence, that my MG was possibly related to hypogonadism, as when I began testosterone replacement for extremely low testosterone levels about 6 months into my MG treatment, most of my other health problems went away along with the MG. I don't think this is true for most folks, but I suggest this test for older men just in case it wasn't coincidental in my case. My neuro and endocrinologists didn't think the hormones were related, but as we know, the two biggest groups with MG onset are young women in their early post-puberty years and old men in their Men-o-Pause years. And the testosterone replacement, for someone who was very low level, brought back ambition, muscle, and a feeling that life again was worth living, with or without MG. I wonder if I will ever know if there is really testosterone-MG link?
Good Luck
Russ
Found your response interesting and have passed it along to my PCP and Neuro to get their thoughts. Have also done a bit of research into hypogonadism - interesting.
It's hard to know what direction to take with this disease/disorder.
It appears that many want to hit MG hard with meds and decrease dosage over time to find lowest level of effectiveness. Others do not. Hard to know what to do.
S