Alton,
I'm sorry about your mother. That's so hard, I know, I lost my dad in August. Stress an anxiety from it could definitely be a trigger for me as well. I took restirol last night , first night I've slept in 4 days. Hoping for more relief now. The steroids have had me so jacked up , I couldn't sleep. I'm currently on 40mg prednisone a day and take mestinon 30mg (I've been halfing it) I'm the type of person who hates taking pills but it seems I have no choice at all at this point. Congratulations on your surgery , I pray and hope remission, and blessings to you all ❤

Hi joy
I know you are anxious and posts talking about people dying would have sent me into a tailspin a few months ago. It made me have a moment myself when I read that. Please do not let that scare you it is very rare these days that anyone’s dies from this and a low percent of people with Mg even have a crisis at all.
Course of the disease is different with everyone and in actuality the majority of people have mild or moderate disease that can be well controlled with drugs , nutrition good mental health etc. doctors will reduce drugs to lower levels after symptoms subside.

You can get all that info on cost ahead of time ? Insurance approved
I was hoping they could do it robotically
I was to big of a candidate!
You really need to talk
To a surgeon who is really qualified in Thymectomy surgery!
They what fits you best!!
Prayers and best of luck

Cindi,
It's been very hard not to be a to drive. With 3 children , I have so many things that need to be done , that requires driving. I never realized what a priviledge and blessing it was to drive until I couldn't. My mom and husband have both been wonderful, and my church too, so much support. So I'm thankful. 2 of my children are sick , doctors appointments, no rest and I feel like I'm in outer space on these steroids. Just messed up. I was able to sleep with a prescribed sleep aid for 5 hours last night. I was so happy. 5 hours in 4 days , but I'm hoping to rest as much as I can tonight. It's hard to during the day with little ones and steroids. I'm hoping on e I start sleeping good again it will help. I took mestinon 30mg twice today.. haven't seen a difference in my eyes. I'm hopeful though I know God has got this one way or another , but man it sucks.

HI, Welcome to the group.
MG is a condition that we may have to treat ongoing, but it is treatable, and the majority of us figure out the right treatment and get back to a decent life again. However, the first year is often the worst as we figure out what immune suppression works for us and at what level. It took me about 5 months on prednisone and mestinon to get MG symptoms to mostly disappear. MG is our body making antibodies that attack our nerve to muscle connection.
The best news is that the junction will completely regrow rapidly when the immune system attack is removed -- so we are never more than a few weeks or months away from pretty normal function with treatment. In fact, the IVIG blood infusions often work within a few days to make us feel normal.
To get on with your life you have to figure out how to transfer some of the family support you do to others; figure out accommodations at your job, get a very good neuro experienced in MG and get a decent working connection with them, and read what you can on reputable websites about MG so you know what is going on and can participate in the treatment and planning. The first year, for most folks, is the worst as the abrupt change in life has to be dealt with, treatment that works figured out (not always easy), and you have to face the emotional impact of a chronic and initially debilitating disease.
However, there is much hope for a decent life ahead. 15% of MG folks go into remission for varying periods of time; 15% have a very difficult time figuring out a treatment that works, and the rest get on with reasonable lives and ongoing treatment. I like to think of it somewhat like diabetes -- ongoing treatment makes life decent.
Good Luck
Russ

As much as everyone relies on medication I think with autoimmune you also have to take a good look at what you are eating and lifestyle as well. Many people believe autoimmune and gut health are connected. Changing your diet and getting enough rest and exercise is just as important for a well functioning immune system. I wish doctors told people with MG to look at food and lifestyle in addition to all these fairly toxic drugs they give people. I don’t think people shouldn’t take drugs they need to, but I think anyone with autoimmmune needs to eat good healthy foods. No one here ever talks about lifestyle just about the drugs.

Amy liz,

My pcp and my family have all told me nutrition and clean eating , healthy lifestyle is important. I've changed my entire diet since diagnosed.

Amy,
You are correct in the diet and exercise for MG patients!
The first thing my Neurologist told me to do start eating healthy and exercise daily along with my medication for me!
Every patient is different with MG and there plan to deal with this disease , not a lot of Neurologist that specializes in MG where I live!

Did anyone symptoms get worse before better while starting the steroids? Mine seem to be getting worse. I e been on the steroids for 2 weeks now.

Joy

There's generally no quick fix, certainly not at the beginning of the journey when those antibodies begin to multiply and damage your muscle junctions. It's fairly common for most of us to have a pretty rough time for the first twelve months. Not only is the disease bad enough but, so too is the medication - there's nothing nice about MG. OK, that's the bad news out of the way, it does get better, of course, in some cases completely better. Don't know if that helps you - hopefully, it does so.

My symptoms got better with medication’s
But there are side effects for steroids
Especially raising your blood sugars!
Diet and as much walking you can do will help !
Hang in there

Also I have had to learn how to deal with stress it makes my symptoms worse!
Stay positive and there are a lot of good study’s on MG
New Journal Of Medicine is a good one!!

Hi, everyone I'm an older patient and I have had success by seeking all-natural means after most conventional medicines failed me. The only thing that I have done fair on is Mestinon but even Mestinon has its side effects and poor efficacy. My advice know your body and keep an open mind.

Lucky you and the best of luck to you. However, most us do need the input of a trained physician and in my opinion are right to rely on them. Totally accept the need to know your own body and in that way give the physician the input he/she needs to help. Actually, of all the drugs we may take Mestinon is probably the one that does work with great efficiency. Yes, it does have some adverse side effects but generally, that is only in the early days.

Joy,
I was diagnosed with MG in 1998...I had symptoms for years before. I have Osserman 2a and 2b which essentially means moderate generalized MG. I had a thymectomy in 2007. Currently my regimen is Mestinon elixir 10 ml (120 mg) every 4 hours, Prednisone 15 mg alternating with 30 mg, IVIG 20 grams weekly and Soliris 1200 mg every other week.

The addition of Soliris has been awesome. I feel alive again.

My two cents on being a mom. Establish and religiously keep an afternoon rest time, even if it’s only 20 minutes. Mine is from 12:30-2:00. Sometimes I sleep, other times I just rest. My kids come home at 3:00–I gave up and have them ride the bus—and I have the energy to make to the 8:00 in bed time. When they were younger, I had a teenager come after school to play with the kids so I could rest. It took discipline to establish the routine. You can do it.