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 have waited to post here until I got my jets cooled and tried to make sense of the nightmare I just went through.
I was hospitalized on 1/17 by my local neuro to start prednisone and Ivig. He told me I would probably get worse before I got better and that is why he wanted me in the hospital. My swallowing steadily declined so that by the 24th I had to be transferred to another hospital. I wanted to go to Mayo, but couldn't get in because they were full with a waiting list. So I had to go to Emory.
As soon as they saw that I take .5 Xanax which I first started after the death of my husband to be able to sleep, but continued on it to help me tolerate cpap at night, they honed in on the psychiatric angle. While I was still in ICU with a feeding tube, they secretly cut back my mestinon dose from sixty mg to thirty mg. I did not know this, but I could definitely feel it. In fact I told my daughter that I felt like they were accidentally under dosing me as I did not get the same benefit and the benefit I got was not lasting as long.
They even went so far as withholding a dose and substituting Tylenol. My daughter noticed that I was worse when they were doing this, but she did not know they were doing it. They also abruptly discontinued my sixty mg of prednisone upon my arrival there.
In their discharge notes they wrote that I was better when they did this, but that I was insisting that I was not. Then they abruptly took out the feeding tube and put me out on the regular floor on thirty mg mestinon.
The psychiatric people took everything I said and twisted it to fit their diagnosis. I tried to remain as calm as I could just so I could get out of there. They decided that since I was seronegative and the EMG that they did under the influence of mestinon was mostly negative that I had a conversion disorder and that I don't need mestinon at all, but need counseling. The attending in the ICU said that he had seen mg, and that I did not look like I had mg. the rest of the people I saw didn't have a clue as to what does or does not happen in myasthenia. They all assumed that if I was string when they examined me, then I was strong all the time.
I tried to explain to them that yes I was strong for a time, but that strength quickly faded. It all fell on deaf ears.
So I gathered my strength and walked down the hall to prove that I was capable of going home, almost didn't make it back, but I passed.
I was hyperthyroid when I first went in the hospital, but by time I got to Emory, I was back to hypothyroid, which they noted in their parting summary and promptly sent me home with no prescription for thyroid med adjustment. They told my daughter that they would not give me a prescription for mestinon, because they felt like I don't need it. Then they wrote me a prescription for mestinon @ sixty mg every three hours?...
They were also so blinded by the preconceived notion that I was a nut case that they did not even acknowledge that I had strongly positive results for antibodies for connective tissue diseases , possibly Sjogren's disease, Lupus or rheumatoid arthritis. Lupus, specifically was positive in another test.
When I went to the Mayo ER, they of course requested my records from Emory and I got the same icy treatment by the neurologist there.
Fortunately, by this time I was beginning to feel better so I just wanted to go home and forget about all of it.
I have begun to get better each day. I still have swallowing issues, but they are no worse than they were before I went in the hospital.
But, my neck doesn't hurt, I don't feel like mymheadmis gonna fall off, my eyes are totally normal again. I feel like the Ivig finally took effect.
I have an appointment in their neurology clinic next week, which I feel like will be a total waste of time and effort, but my I feel like if I don't go, it will only validate their reasoning. I have to wait till May to get an appointment with a neuro ophthalmologist. But my eyes are not wonky right now anyway, so he would probably say I was nuts, too.
Sorry this is so long and rambling, but I just had to vent with someone who may understand.
I was hospitalized on 1/17 by my local neuro to start prednisone and Ivig. He told me I would probably get worse before I got better and that is why he wanted me in the hospital. My swallowing steadily declined so that by the 24th I had to be transferred to another hospital. I wanted to go to Mayo, but couldn't get in because they were full with a waiting list. So I had to go to Emory.
As soon as they saw that I take .5 Xanax which I first started after the death of my husband to be able to sleep, but continued on it to help me tolerate cpap at night, they honed in on the psychiatric angle. While I was still in ICU with a feeding tube, they secretly cut back my mestinon dose from sixty mg to thirty mg. I did not know this, but I could definitely feel it. In fact I told my daughter that I felt like they were accidentally under dosing me as I did not get the same benefit and the benefit I got was not lasting as long.
They even went so far as withholding a dose and substituting Tylenol. My daughter noticed that I was worse when they were doing this, but she did not know they were doing it. They also abruptly discontinued my sixty mg of prednisone upon my arrival there.
In their discharge notes they wrote that I was better when they did this, but that I was insisting that I was not. Then they abruptly took out the feeding tube and put me out on the regular floor on thirty mg mestinon.
The psychiatric people took everything I said and twisted it to fit their diagnosis. I tried to remain as calm as I could just so I could get out of there. They decided that since I was seronegative and the EMG that they did under the influence of mestinon was mostly negative that I had a conversion disorder and that I don't need mestinon at all, but need counseling. The attending in the ICU said that he had seen mg, and that I did not look like I had mg. the rest of the people I saw didn't have a clue as to what does or does not happen in myasthenia. They all assumed that if I was string when they examined me, then I was strong all the time.
I tried to explain to them that yes I was strong for a time, but that strength quickly faded. It all fell on deaf ears.
So I gathered my strength and walked down the hall to prove that I was capable of going home, almost didn't make it back, but I passed.
I was hyperthyroid when I first went in the hospital, but by time I got to Emory, I was back to hypothyroid, which they noted in their parting summary and promptly sent me home with no prescription for thyroid med adjustment. They told my daughter that they would not give me a prescription for mestinon, because they felt like I don't need it. Then they wrote me a prescription for mestinon @ sixty mg every three hours?...
They were also so blinded by the preconceived notion that I was a nut case that they did not even acknowledge that I had strongly positive results for antibodies for connective tissue diseases , possibly Sjogren's disease, Lupus or rheumatoid arthritis. Lupus, specifically was positive in another test.
When I went to the Mayo ER, they of course requested my records from Emory and I got the same icy treatment by the neurologist there.
Fortunately, by this time I was beginning to feel better so I just wanted to go home and forget about all of it.
I have begun to get better each day. I still have swallowing issues, but they are no worse than they were before I went in the hospital.
But, my neck doesn't hurt, I don't feel like mymheadmis gonna fall off, my eyes are totally normal again. I feel like the Ivig finally took effect.
I have an appointment in their neurology clinic next week, which I feel like will be a total waste of time and effort, but my I feel like if I don't go, it will only validate their reasoning. I have to wait till May to get an appointment with a neuro ophthalmologist. But my eyes are not wonky right now anyway, so he would probably say I was nuts, too.
Sorry this is so long and rambling, but I just had to vent with someone who may understand.
Sorry you had that kind of experience.
Cellcept will take months to be effective, so you will need the mestinon at a bare minimum. Glad you got the IVIG
Even if someone DOES have a conversion disorder or other mental illness, they deserve to be treated with the same kindness and respect that is due to anyone else!!! It is wonderful that you have your daughter to advocate for you!!!
Did you end up having the IVIG? Do you feel like it helped? Are you taking Imuran or Cellcept? I am so sorry you have been through all of this and hope you can leave this chaos behind and recover in peace.
Hugs,
Rosie
Right now, I am on mestinon 30mg every three hours. But was prescribed 60mg every three hours by the staff at Emory.
They did not even tell me all this. They told my daughter privately, but I was kept in the dark and just sent out the door. I got a copy of my records so that I could figure out what was going on.
Be well,
Someday the 10-15% of folks diagnosed with MG who are seronegative will have a test that gives them a clear diagnosis, but until that time, the quagmire continues and treatment will be uncertain.
A big problem in treatment is the placebo effect, where about 1/3 of patients report improvement with sugar pills. The effect is real--sort of a mind-body thing that works to make you feel better and actually improve if you think the medicine will work. In my work in medical research we had to try very hard to remove that from the actual effect of a medicine being tested. The doctors were probably trying to see if mestinon was working as a placebo--something quite difficult to do in a hospital setting.
In my case, after I took a mestinon, I could look out the hospital window and over an hour track my above/below double vision lessening--I looked at a distant building and measured the inches between the top of the building as seen with each eye until they became one at about 1 hour. Quite obvious to me it was working--and I could plot the onset and effectiveness objectively--didn't really impress the doctors, but as a retired physicist, was rather fun to do.
Good Luck--hope things are better. By the way, MG folks generally score much closer to being depressed than normal folks--a reflection of the reality of a disease that makes life difficult and uncertain. We aren['t so much depressed as we are realists.
As part of my earlier denial, I experimented with being on and off mestinon for a time just to see if it was the placebo effect I was experiencing. Until my symptoms became more pronounced in late November was I able to determine that mestinon definitely had a positive effect.
But of course that could all be in my head!
It is nuts.
and never should any of our drugs be reduced Especailly mestinon. They did that to me and I ended up on respirtor.
My advocate now is my husband. We were fired by one neuro....because we asked too many questions.
so be it...I am alive
I finally had to establish set times, at nine am, twelve noon, three pm, etc and get the doctors to reinforce this with the nurses, but then there would be a change of staff and the education process started over again, along with the illness and frustration.
Then they would bring my mestinon in, but would not give it to me until they got done examining me, I packaging other meds, etc.
I feel like the Ivig saved me despite the torture that I had to endure and I am grateful for that.