new with questions about mg
 

A little over two years ago, I started having some strange health problems.I started having problems swallowing.I would take a bite chew it up and swallow,but it wouldn't go down, sometimes this would make choke.I lost my appetite, could only drink liquids and I felt like crap. I was also having constant dirreha(because I was only drinking ensure and water.) My left eyelid started drooping when I was tired.My knees also started swelling.I had a swallow study done, ihad a upper gi and a colonoscopy, both came back normal.I went thru this for about 5 weeks, then I was able to eat again and I felt better.I thought it was over, but I was wrong.The symtoms keep coming back. Sometimes it only last a few days somtimes it can last weeks. Everytime it comes I have problems swallowing and can't eat, and it's back to ensure.My drs have tested me for lupus and ra,all of those have been negitive. they think that this is a autoimmune disease but they don't know which one.
Last week I asked my dr to test me for mg, when I did my own research this is where I ended up.mg doesn't explain my swollwen knees. But it pretty much explains everything else.Today I had the acetylcholine receptor antibodies and the anti MuSK antibodies done as well as a chest xray to look at the thymus gland.I will get results within a week.
Do these attack come and alot?
What do you all do when you can't eat because of swallowing problems?
I am sure I will have more ?'s later. I just wanted to come by and say hello.

thebookcritic
 

Hi... sorry you're having problems... have you asked your neurologist if you could try taking Mestinon pills to see if they help your symptoms? This was the first thing they had my daughter do when she was being tested for MG... then, she had a CT scan where they found she had an enlarged and hyperactive thymus so, she had a robotic thymectomy done last Oct. 5...now she is doing well and only taking 2 mestinon pills a day instead of 6! Good luck to you.

Mestinon can improve the situation in case of MG but can't cure it…it's like aspirin, it mask the symptoms but doen't adress the causes of the illness.
If you have swallowing problems, you have to eat less but more often in order to sollicitate less your throat muscles, avoid also to speak while eating…and since you eat less, you should absorb more caloric food unless you want to lose weight!
The consistency of the food should also be adapted, use a blender for meat for example or select food which pass more easily: lasagne better than spaghetti, use ketchup or gravy to moisten food, overcook vegetables…
There is also a position to open the throat while you eat: the chin should be at about 2 inches from your chest, try until you find it.
Use a straw to sip small amounts of liquid at a time.
These are some recipes which worked for me.
Good luck,
Maurice.

I am still waiting for the antibodies tests to come back. I called the lab today, but they weren't back yet. I have been adapting my diet now for a few years. I use sauces on everything. But I am sure my chlosterol is going way up because of it. I use ranch and cheese sauce on alot of things. I eat alot of pasta, and marcaroni and cheese. I usually don't eat bread, it is to dry to swallow. I also haven't ate steak since I choked on it about 2 years ago(man do I miss it)Chcken seems to be ok if it is moist, and hamburger is usually ok. Sometimes I can't swallow anything solid and during those days I drink ensure and protien shakes.
I live in a small town where the drs. only stay for three months. We finally got a good one in and He is the only Dr. that has taken me seriously with this. I am really hoping to figure out what is going on before he leaves.The symptoms are so hard to explain and since they come and go it makes it tough to understand.
Thanks for your replies, it is nice to talk to people who understand.:)