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 afternoon
My name is Jackie, I was diagnosed with MG February 21 2019. My symptoms began September 21 2017 with double vision. My eye Doctor sent me to ophthalmologist neurologist, her initial diagnosis was a mini stroke. On my second visit she said my eyes had changed and she thought it was possibly MG (which never before heard of). She did a blood test it can back negative, but she was very adamant about it could still be MG. This was the first week in November. 2 days before Thanksgiving I began to have stroke like symptoms which are very much like MG. I was admitted to the local hospital for a stroke, they started me on medication for blood thinning. I was in rehab for a stroke. My condition continued to get worst. I would began to walk and my legs would just collapse under me. My local doctors said I didn't have MG they only did the blood test which proved negative. They became frustrated and released me to Duke hospital. At that time it was neccesary for me to use Walker. On my next visit to the Doctor after seeing me on the Walker she questioned me about other symptoms and suggested me to have the EMG testing for MG. Could only get test done February 21 a month and a half later. I was diagnosed for MG. Could not see a doctor until June 5 remember this February 21. The Doctor said if there were any cancellation she would call me, but if I got worse go directly to the emergency room at Duke hospital. I was admitted to Duke hospital on March 5 2018. I was started on MESTINON that same night. On the following day they began paraparesis treatment on me 5 treatments in 10 days. Between December 1 and March 6 I could not dress myself the month of February I couldn't bathe myself. The moment I received the MESTINON and the first treatment I was able to bathe and dress myself. One month later my vision was single vision again 0h happy day. Along with the MESTINON I am takin prednisone, cellcept and I also had 4 treatments of ivig. All sounds great and it is, but 1 and 1/2 years later I am basically house bound. I only go to see my doctor or occasionally go to church, why because I get so tired I can barely sit up. I get the bobblehead, and trembling.I went from being a very active 65 year old Pastor's wife, co-owner in a business that I was very hands on in, mother grandmother and caregiver to trying to just my personal hygiene, fix my breakfast and lunch, maybe clean my wash bowl every once and awhile. When I went back to my Doctor in April he decreased my prednisone from 30mg to20mg per day. I have seen a drop in my improvement. I am also do physical therapy every day.
My doctor continued to tell me I had anxiety. I've had anxiety l know what that is like.
Is there any one else that cannot get back to normal besides me.
You surely have had a difficult time in getting diagnosed and treated.
The most important part of MG treatment is our neurologist -- and our ability to work with them to get the results we want. We have to be persistent and insistent in getting them to respond to our goals.
You should call your neuro, tell her/him that you are doing even worse with the drop in prednisone and that is unacceptable. Also state that you know that others with MG tell you they don't have to live so disabled as you are, and that you want aggressive treatment to get this under control. With Medicare, we are pretty much assured payment for aggressive treatments when others don't work.
Is there a reason why you should be taking less prednisone (i.e. pushing you into diabetes or other problem)? If not, you might ask your neuro to try higher doses to see if it will get rid of you MG symptoms. Mine went away at 60mg per day and then I was able to taper it back to try to find the lowest effective dose -- but I knew that at 60 I could drive the MG away (after a month or so).
Don't accept this level of functioning. If your neurologist is non-receptive to your insistence on getting better, ask for a second opinion.
I think we are the driver's of our medical care; and only we can convince the medical people that we expect results. I pushed my neuro to move my prednisone high as I insisted that life was not worth living without improvement and I planned to find a doctor who would over treat rather than under treat me before I gave up on living a productive and enjoyable life. After that, she realized my goal was not existing, but living.
Good Luck
Russ
I will absolutely talk with him next week. Thank you.
I haven't been on this site for years and I am beginning to think I am back to share with others there can be a new life ahead.
Your situation sounds about like mine in the beginning. I lost track of time because it is too hard to remember how bad it was.
Basically I got so bad I was on a ventilator. As I improved they told me it would take a year for the cellcept to take full effect, It took about a year to get my feet solid on the ground. Lost my hair and was housebound like you.
These last five years I have pretty much been"normal". I always had to pace myself but I was able to drive to my daughter a hour away and spend the night to help her. he had triplets.
Anyway I was pretty much able to resume a life with rest every other day.
This last year I have been able to be active every day.
There is hope.
My concern is that you are on too little of prednisone right now. I was on 30for quite a while.
Anyway, hang in there
you will get better.
A drop in 10 of prednisone is a lot. I would call him and request to go back to 30.
I would get a second opinion also
My doctor goes for the fix. I am shocked youa re on cellcept too.
About Therapy....I quit when I had it. Too exhausting when in a crisis.
Great to hear you got things figured out and are doing well. We need folks to tell that story too -- that there is hope for a decent future!
Good Luck
Russ
It exhausted me and kept me weak. We need rest when we are bad. I refused. Swimming always helps me get stronger but lifting weights and repetitive motions of the therapy I was in made my mg worse because of the repetitive motion.
Recently my eye lids has been drooping and vision acting up a bit. Doc recommended and I have increased prednisone by 10 until my eye quits drooping and now I am at 50 of prednisone a day. Wasn't happy about it but after weeks I am better. I stay at 50 for 2 months and then taper down again.
Diabetes can be hard. I have a friend who just controlled hers by diet. Her doctors told her she would never be off insulin but now she is. Sometimes we have t really take charge of our health.
I know it is hard but when I was on a ventilator years ago I kept begging for mestinon. The neurologist said I couldn't take it because I couldn't swallow.
It was months later that I learned that there is a mestinon we can take intravenously. Doctors are only human. We have to participate in our care.
By this time that neurologist( highly recommended) doctor suggested I find a new doc and I am glad we did.
One day my new doc said he had 11 mg patients before my apt. I am always grateful I found a new doc.