New to site new to MG and scared
 

I don't really understand what is happening to my body. I have just been diagnosed (after many years) with Myasthenia Gravis. They just started me on Mestinon. Can anyone out there tell me what to expect. I am feeling the fear of it all right now and am very depressed!

One big, warm, tight, hug, handshake and howdy, moose-size official type welcome to the site. This place is amazing!

I'm not familiar with MG, (Moose has the MS) but we have members here who are and even a forum dedicated to it. Being scared and depressed is OK. Why? Because you came to a great place for support and;

You are not alone.:)
You are one of us.:hug:
And we are here to help.:grouphug:

Moose- you just brought tears to my ever confused eyes! Thank you!!!!

Hey there
 

Lizzie- You are a doll! I feel like pulling the covers up and hiding. I've had symptoms for 12-15 years but it wasn't until it hit my eyes that they figured it out. I don't test positive for the antibodies...is that really possible?

Welcome
 

Hi Josie,

Welcome! I was struck by your words & I can relate to what you are feeling -honest! I was diagnosed last Feb., after 4 days in the hospital. My blood test always come back neg. and my day to day symptoms sometimes vary. I am currently taking mestinon, and sometimes, when I am having a "flare up", I will supplement w/ prednisone, for a week or so, until I am feeling better.The best advise that I can give is to educate yourself & your loved ones. MGFA & MDA websites are good places to start. I would also suggest sharing your fears w/ loved ones, asking a friend, spouse, sibling, etc. to go w/ you to your next neuro appt. It can really be a difficult thing for others to grasp-but maybe if they go w/ you, it may help. You have a good place here, the people are supportive, and understanding. Good Luck! You are in my prayers.
Peace,
Nancy Lee

Hi Josie,

welcome to the forum, its a great place to talk, cry, ask questions, many a time I come here crying and left much happier.

I was diagnosed in December 2002, by my optomotrist and opthalmologist!!
When I was diagnosed I could barley get out of bed in the morning, now I'm soooo much better, but its still a struggle sometimes.

I'm on medication, also had a few IVIG's over the years.

I agree with Nancy Lee, find out as much as you can, and tell all your loved ones about it, especially taking someone with you to appointments, I found early on I'd leave the neuros office completly bamboozled, but time and experience has helped alot.

Also ask lots of questions here, as we've all been through the wringer already.

hope you weeks improved slightly
take care
redtail

Hi Nancy Lee,
I'm curious about the Prednisone you take. Does your neuro have ou to do a gradual tapering after you've been on it for over a week? After being on Prednisone for over 7 days, ones adrenal glands shut down, and have to be carefully and slowly awakened. Otherwise it can be very dangerous.
I've been on Prednisone since 2004, and have been trying to get off for well over a year now. It has to go slow, really slow, other wise a person can die. I didn't know if you knew this, and sometimes dr's forget to explain this to their patients. Not sure why, as it's very important.
love Lizzie

Lizzie,
I am on a low dose & there has been no mention of tapering off or of adrenal glands. But, I am going to see him on Wed. & I will be sure to ask about this-Thanks for the info. I really like my neuro, but it is scary to think that he may have forgotten to explain the risks!!! Thanks!!!
Nancy Lee

For sure, neurologists DO not understand the adrenal gland. If you have been on steroids, you do need to taper down or you can die from adrenal crisis. Even when I was in the hospital, and I am a steroid dependent person due to having my adrenals removed due to Cushing's disease and needed steroids to LIVE and the neuro residents would not give me steroids and almost killed me that way. They simply do not understand how steroids really work - they think they are anti-inflammitory or magic but fail to see what they really do to the body long term which can be damaging to bones, muscle and eyes and shuts down the adrenal glands.

You have to taper off to make sure your adrenal glands wake up to take over their essential function. If you are nauseus, achy, feverish, low blood pressure and feel horrible, you may be in trouble. Look up adrenal crisis to make sure that you are not having any issues. Get medical attention and tell them you were taking steroids.

Here is a good site for looking up meds....

I cant post a clickable link so look up..

right at the top of the page here on NeuroTalk, right side above where it says welcome, is a link called Drugs. makes it easy to look up meds and many supplements.

(also checkout the other llinks there. )

response to myasthenia gravis concern
 

Josie: I just logged on and read your note. I, too, was recently diagnosed with occular myasthenia gravis. I, also, was very frightened. After several dose changes, I am taking mestinon and prednisone (a steriod) and my vision returned to normal. Now at the stage of trying to maintain no symptoms with as little drugs as possible. Stress is your biggest enemy- try to minimize stress in your life (easier said than done!). Also, rest is of great benefit for this disease. You may perspire more than usual from the Mestinon but there are really very few side effects of this drug. Good Doctors who really understand this illness are hard to find-- try to local an expert in your area. (e.i. major health centers in larger cities). Your action plan will be try to prevent more serious symptoms; there are several courses of action. Don't be scared; you''ll be OK. Most people (over 90%) live pretty normal lives. Believe me--I have read a ton of info on the subject in the last 2 months!
Respond if you' like. GARY (by the way, I'm 61 yrs old and age does play a role in this.)

I have also recently been diagnosed with MG
 

I was also recently diagnosed with MG after about 1 year. It was terrifying at first, but as long as you have a good doctor you'll be fine. I've had several IV IG treatments and they were the best! I also recently underwent a thymectomy and hope to be in remission soon. What tests have your doctor performed on you? Mestinon was a life saver in my case! I finally had energy - it was the best! It may upset your stomach a little bit, but trust me it is well worth it! I was finally able to swallow, walk and see for the first time in a while. I am also on steroids (60mg per day) but will be reduced to 50 mg tomorrow. The steroids are what really made a difference in my life. Please take care of yourself and know that you are not alone.:)