NeuroTalk Support Groups - New to site new to MG and scared

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - New to site new to MG and scared (https://www.neurotalk.org/myasthenia-gravis/45167-site-mg-scared.html)

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!!!!

Hi, ((((hugs))))) It's going to be alright, honest. I know you're scared, but the good news is that you just put you on Mestinon, and you aren't in the hospital, and even if you were, you'll be okay. I'm on Mestinon, Prednisone, Cyclosporine, and provigil.
It takes a while for all the meds to get worked out, and for the doctors to figure out what your body needs in order to feel better.
How were you diagnosed?
Please if you have any questions, no matter how small they may seem, please ask. I was diagnosed in 2004 through a tensilon.
The important thing to remember, you'll get through this, but it will take time.
Much love and Prayers
Lizzie

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?

Awe..Hey, it really is going to be all right. And yes it is very possible to test negative, not only to the blood work, but to all of the tests, and still have MG.
And believe it or not, some people, yours truly here, have tested neg with the blood and then 4 years later, have it show up on my labs. So go figure.

From what I understand, and from what most experts say is that it really all depends on the amount of antibodies that are in the blood stream at the time of testing.
Same with the emg's and like tests, if you have the test during a "non flaring" time, and you are feeling strong, it usually won't show up. These are the reasons it is so hard to test, and diagnose.

I know of one person, who has tested negative to everything, and is in a severe state, to the point of needing a powerchair, and can barely hold himself up, and all tests, except for the tensilon came back negative. So it is indeed complicated.
Each case is so different. One expert said the only thing that was consistant with Myasthenia is it's inconsistancies. And that is from someone who deals with it on a daily bases in the medical community.

Same with treatment, each case reacts differently. Some only need Mestinon, others need Prenisone and Mestinon, and still others need those, and other treatments like, cellcept, cyclosporine, imuran, ivig, plasma etc.
It's frustrating for certain.
You'll be okay, it'll just take a while. the best thing you can do is read everything you can about it.
and Ask away...
I'm not sure why it says I'm a junior member, I've been here since it started..lolol... I don't come too often, but please feel free to ask away..
Love Lizzie

My new friend Lizzie- thank you! I started another thread also and between the two I am finding such kind souls. When I woke up today and the world was blurry for awhile and my stomach was unhappy, I did not know how to get throught the day. With the help of you, others and my sweet dog Scoutie, I am here for another day.
Many gorilla hugs to you, Josie

Quote:

Originally Posted by Josie S (Post 274727)

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