MYASTHENIA GRAVIS "urgent" help needed!
 

To whom it may concern,

My name is Kristina, and I am in desperate search for a physician with expertise regarding the disease MYASTHENIA GRAVIS. My Grandfather, a 73 year old man who lives in the Republic of Slovakia was recently diagnosed with the disease and has had reoccurring and worsening symptoms over the past two weeks. Slovakian doctors claim to have had little to no experience with treating the disease and are actively searching for support in treatment methods. His health is rapidly deteriorating and he is in need of immediate help. My family and I are in a desperate situation. Please, if you have any suggestions, input, or support that you can provide to my grandfather’s medical staff, we will forever be thankful for your assistance.

The situation of his condition is as follows:
Two weeks ago, he had initially been admitted to the hospital with vision problems and weakness of the eyes muscles. One week later he was diagnosed with MYASTHENIA GRAVIS. He was prescribed these drugs below:

OMETRAZOL20 mg 1-0-1
KALDYUM 600 mg 1-0-0
MESTINOM60 mg 1-1-1-1
MILGAMMA 1-0-1
CAVINTON10 mg 1-0-1
PREDNISON80 mg
IMURANSONY 2-0-0


After a two week stay at the hospital, his symptoms subsided and he was released. However, within three days, his symptoms were back and with increased intensity. He has now entirely lost the ability of chewing, swallowing, talking, and more. His condition is rapidly worsening. That also includes high blood pressure.

Again, the issue here is a lack of knowledge regarding this disease in the Republic of Slovakia. My grandfather’s case has been taken all the way to the capital city and doctors still have little insight. They have suggested that doctors in the United States may have more experience with MYASTHENIA GRAVIS. Please help our family find resolution to this terrible situation during the holidays. Any input you have will be invaluable. Thank you in advance for you kindness and support.

It sounds like his medicines are on the right track as far as the ones I recognize. Some of them I am not familiar with.

One thing to understand about myasthenia gravis is that stress sets it off. He most likely needs to take it easy for a while. Rest and rest some more.

The immune suppressive drugs such as immuran and prednisone take a while to kick in.

If he has a tumor in his thymus, removing it could help. They would need to do a cat scan to find out about that.

I am not sure that anybody really has all the answers in the US or other places.

I hope your Grandfather gets better.

Hi Kristina,
Your grand father has about the same age as me, so I know how he feels...
Have a look at this:
http://neuromuscular.wustl.edu/mtime/mgrx.html
You will have a complete view of the range of possible treatments.
In your list, I recognize Mestinon, 60 mg 4 times a day, Prednisone 80 mg and Imuran which are quite adequate for MG.
You should be cautious with his food which should be minced and mixed so he could swallow it without chewing. Small meals but several times a day, he should drink liquids with a straw by small sips to avoid false routes.
Prednisone should be taken with his breakfast and the normal end dosage is 1mg/kg but it is normally increased day by day to reach the full level, if possible. Mestinon should not be taken on an empty stomach, always take something with it, milk, juice, chocolate...
Keep us inform of his situation and if you have any question, do not hesitate!
Maurice.

Too many medications combined sometimes creates serious problems-they do not interact well, I am the same age. I have symptoms like choking easily etc and weakness...I gave up
wheat flour a few years ago and it helped. Some people can't assimilate wheat products when suffering from MG. I was one of them; no doctor told me, another MG victim told me she was helped by doing this. We develop a sensitivity to wheat products among other things...bread is a big culprit. I pray for your grandfather's recovery from fear and pain. wanda J berryhill

Kristina help is available for your grandfather. Come to the .U.S.
 

Come to the U.S and look up a Dr. Harold Weinberg located in New York. He is a neurologist and works out of NYU. He helped my husband go into remission in the late 1980's. My husband in the beginning was treated with plasma pharises which is similar to dialisys. He also had his thymus gland removed. The only meds he has been on for the past 20 years is imuran. Is he taking all these drugs at once? Mestinon is a bad drug it is very difficult to control, they gave this to my husband in the beginning and it was terrible. I hop you can get him help soon.