Bless your heart. I am sorry that you are having do many issues.

First of all, take each hour at a time if you have to. I try to enjoy life as each day comes. Sometimes, it's difficult when we feel shut off from the world. I recently over did it, plus I am dropping on prednisone and the humidity and heat are extreme where I live. So, my MG symptoms have flared after being under control for four months. Today, I am only doing what I have the strength to do. I will not participate in a festivity tonight- I have learned to say no. I don't feel bad about it anymore; I don't care what others think.

Secondly, surround yourself with people who are supportive if you. It's exhaustive trying to constantly explain our disease to people who aren't trying to understand in the first place. Comparing MG to anything is not fair. I am very compassionate of others with various health issues, but MG is taken lightly. For the first two years that I was DX, I had 3 or 4 people who cared enough to keep in touch. I somehow appreciated these people and went on trying to enjoy life as best I could. This support group got me through some tough spots. Everyone here knows how we struggle day to day.

Feel free to vent here any time. Like I said, if anyone understNds it's the people here on DS.

Stress makes MG worse and having other health issues plus stressful relationships adds stress to I stress.

Best wishes!

Okay, so this is going to be very long but I hope that it will help you in some way but first...

I'm so sorry to hear that you are struggling with MG and others not understanding it. It's kind of a right of passage after diagnosis, ya know. Everyone has to go through explaining the unexplainable to your friends and family. It's a very hard lesson in futility. The more you explain the less they understand. I mean, think about it... other doctors don't even understand it.

With my husband I explained it and he still thought that I was exaggerating the extent of my weakness. Sadly, my husband didn't get it until my neurologist told him to knock it off. I was so happy that my neurologist took the opportunity to tell him what a jerk he was being and he got the message.

Honestly, it doesn't matter what you tell your friends and other family members. It's too complex and has too many technical bits... and their eyes start glazing over after the first minute anyway.

I had to invite my girlfriends over under false pretenses so we made and decorated Christmas cookies which we had all been talking about doing.

Not that I planned this but.... while I was in the hot kitchen decorating the cookies my legs just quit holding me up. My knees buckled and I took a whole sheet of sugar cookies down with me. Once they stopped laughing and realized that I was okay they were pretty darn ticked that I ruined their cookies. When I finally made it to the couch I had to just spit it all out. I was lucky to have a captive audience because they were a little scared by what just happened.

I printed an "emergency card" for each of them in case we were together when I crash. I turned it into a craft project and distracted them so that I could tell them just how serious MG is and how fast I can deteriorate. While they were making crafty little covers for them to keep it safe in their purses. While we sat around I just told them, "Look, I know you guys are sick of hearing about this but it's critical for you to know about it if you want me to hang out with you guys. I need to make sure that you know what to do if something happens to me." Then I gave them the shortest possible explanation that I could put together. It went like this...

My disease is so rare that even most experienced neurologists have never seen a patient with it. When I do simple things like walking, brushing my hair or teeth or even talking, I get gravely weak. Heat, stress, illness,extreme cold, etc all make it exponentially worse. There is a danger that I won't be able to breathe for myself or talk. If I start slurring my words or sounding really nasally I need you to recognize it because sometimes I don't realize it until it's too late. I need you to help me get somewhere to rest. If I don't rest, my symptoms will worsen very quickly. If that happens you need to call 911 first and then my husband. When the ambulance arrives you need to give them this card and make sure that they read it. If they don't read it they could kill me by giving me medications that will dramatically worsen my condition.

The funny thing is that it was supposed to be a kind of chilly day for Hawaii. It was rainy and there were lots of winds at the time so I thought that I'd be good to go with making cookies. I was wrong but they haven't questioned the seriousness of MG since that point.

I know that this won't work for everyone but it might help you come up with a plan of your own. The important thing is to get it through to them that this is as serious as a heart attack and a lot less familiar to doctors.

I wish you luck in dealing with this issue. We are all familiar with the fight over how we look vs. how we feel. You can always come to us to help you get through this. This group has gotten most of us through some of the roughest times. We will help you with it too.

Big hugs to you....

So sorry to hear of your medical issues and complications, but good that you have a number of physicians on board. A bit flabbergasted about your family not being supportive, considering the care you require and the blood clot. How is your condition less apparent than someone with heart disease or even cancer. At least cancer can be treated, often successfully, without being chronic. I am lucky not to be too impaired by MG (yet), but would not wish a neurological disease like this on anyone. Taking drugs, etc. is scary!
Anyway, best wishes and take care. Keep us updated on your condition, as well.

I presume your "MG dr" is a neurologist that specializes in Myasthenia Gravis.

I want to thank each of you for your words and your kindness ~

I am working with my case manager to try and come up with a plan to help me figure all of this out ~ What that might look like, I have not a clue but we will see!

Aside from family, surrounding myself with supportive people is difficult as we just moved nealry 2 hrs away from our last home. My sore social group was there - that only adds to the stress of what I am going through. :/

Yes, my MG dr is a neuro-muscular specialist and only sees patients with neuro muscular diseases - he is an awesome resource - though I have only seen him in office once - and in the hospital once, when I was in crisis. I see him again in 2 weeks.

I am working on ways to make this work and to keep my spirits up ~
again I appreciate each of you.

I am so sorry to hear you are going thru this! When I was first dx (2 1/2 years ago), I mainly had droopy eye and shortness of breath. Everyone was concerned cause they thought I must be having a stroke. After I told them it was an autoimmune disease, a number of people said, Oh, OK. As if that was it. As time went by, I got weaker and weaker, it was harder to do things, I was on tons of Prednisone and gained 20 lbs and looked awful. Then my friends began to realize there was something really wrong with me...I had lost my bubbly personality and they could tell I was very tired and trying to hide it. So, they asked for specifics, and I gave them the clinical response...that my nerves don't send the message to the muscles to move, so I'm very weak. And one of the muscles that is weak is the lung/diaphram, which causes shortness of breath and could put me in the hospital. Maybe I'm just lucky, but ALL my friends understood this, and constantly asked how I was, what they could do to help...etc. Once I went into the hospital and everyone came to visit, brought food when I went home, ran errands for me, etc. I don't mean to brag...I just wonder if the friends/family really "get it"? Maybe a clinical explanation would help...

I'vee had so many different treatments over the past 2 1/2 years, including IVIG, Rituxin infusions, different meds, etc. But being unable to walk 2-3 blocks with my friends when I used to walk 3 miles is quite a difference!!!

I was so reluctant to accept my "new normal". I hated it. I felt awful most of the time, but still tried to be positive. It was hard. But the reason I'm writing this in the past tense is because it's gotten better. First, my new Methotrexate regimen, along with Ritxuin, is beginning to work. But second, I've learned to accept what I have. that is really the hard part. I do the best that I can, and am proud of any effort I make, regardless of how little it is. I pat myself on the back on good days, and try not to beat up on myself on the bad ones. Thankfully, like you, I have a very supportive husband. And sister.

So, stay in close touch with anyone who wants to know what's going on. Try again to explain to others. Have them look it up, ask around, etc. Hopefully you'll find emotional support along the way.

I don't know how old you are, but your migraines could be caused by Menopause. I had terrible migraines for years when I went thru it. After a long diagognosis (years!!!), we discovered certain foods triggered them. And the meds they have for migraines today are really good, so hopefully you'll some relief from that soon.

Hang in there. People on this website have been thru it and understand. Come here anytime for a lift !!!

Sorry things are so difficult for you. MG can be overwhelming, but with persistence, you should be able to get it under control. It takes time for some of the meds to work, especially cellcept which works for some and not others. It is hard to see ahead when things go wrong, but they do get better and most of us can look back to the early and severe MG as something we got past.

I was able to tolerate prednisone and that was faster to get control.

If you have an MG support group in your area, that can help. With a rare disease, most of these groups are in larger communities. Ask your doctor about it. I didn't go to a group, but got help here at this group.

Sometimes well folks don't understand MG well enough to realize how ill we can be and sort of get annoyed at us for never getting better when we look pretty normal. Even my doctor thought I was depressed or maybe lazy before the MG diagnosis explained what was happening to me.

There are some good medicines for migraines that you can try. My wife found Imitrex (sumatriptan) very good and very quick -- headaches that otherwise went on for more than a day went away in 15 minutes with two of these pills. There are about 7 different triptan type drugs that work in similar ways.

A handicap aid such as a cane, walker, or in my case an eye patch and cane can be remarkably effective in getting others to see our disease as real. I also explained to my relatives and friends, that in the days before treatment, most folks ended up dying with MG within a few months to a few years, but now with strong medicines that have harsh side effects we can, if we are very careful, stay alive and do some of the normal things in life on our good days.

And sometimes we can go into remission from symptoms for months and years, so that is always something we can hope for too. My own remission is now 26 months after some severe MG problems back in 2012-2013.

Good Luck

My heart goes out to you and I pray you get the help you need ASAP. I have been in the hospital twice in the last four months because of breathing difficulty. I am weaker this time and while I try to stay positive, it is very difficult, especially since I have young children who are frightened and confused. One thing that helped me make family and friends understand is by writing about my experiences in a blog. Those who have read my posts have responded with compassion and even apologies for not fully understanding what I went through and still going through. A few admitted they cried and were heartbroken. But let us not lose hope that we will get better. Most seem to improve in time, and I am praying you and I will too. Best of luck to you!

I am so sorry to hear of your difficulties.
Hopefully the clot will get removed and cellcept will kick in in months ahead.
Since you ask for encouragement I would like to share the two things that helped me the most.
1- good diet. Could this help the headaches. Leave out eggs, corn, dairy, auger, artificial sweeteners and gluten and beef and see if that helps.
Basically fruit, veggies, chicken and fish.
2) I had in home BIBLE studies that have changed my life.
That has been my greatest gift.
I hope you get well soon.