June is MG Awareness month, as I'm sure most of you guys know. And it's summer, the dreaded season for MGers. Of course, if you're in NZ or Australia or other parts Southern Hemisphere, you're headed into winter!

How is everybody doing? Are you doing anything fun? Staying cool?

I'm just hanging out with my dog, Sami (Shih Tzu), doing some writing, and enjoying the plants on my deck (blueberries, strawberries, peas, pumpkins, sunflowers, lettuce, and flowers). And, of course, the birds that stop by to eat and say hello.

I miss you guys. Where is JJ? Still in Denmark? What's Rach up to? Has anyone heard from Jana, Abby, Ro, and so many other MG vets? Are you newbies doing okay?

I'm grateful that John put this forum together, so that we can all share what we know about MG, share our own experiences, and support each other. I'm grateful for the Mods, who put in so much of their time to help. If this forum wasn't here 17 years ago, I would not have found out the details of MG and what might lay ahead for me. This forum, and all of you, are invaluable. Yes, even all of you lurkers! Thank you for all you have done for others with MG, whether here or elsewhere!


Annie

Been out of hosp for a week now. slowly imoroving. Thankful for you Annie

Pingpongman, I'm sorry to hear you were in the hospital, but I'm glad to hear that you are improving bit by bit. Hang in there!

I was in the hospital last week also. I had aspiration pneumonia, which was related to my generalized weakness (possibly myasthenia gravis?). I'm improving, too. We've been having trouble managing my issues, and I'm having plasmapheresis three times a week. It is keeping me out of the hospital, mostly, but it is a lot to manage. The heat has been quite bad this week, and that is definitely a challenge! I hope the weather will get cooler again as soon as possible. That would be a plus.

I agree, Annie. Thanks to everyone here for this support group, especially the moderators and those who help to answer questions! It's a wonderful resource. I'm grateful to you! Best wishes to everyone who deals with myasthenia, especially during this month of awareness. Please take good care of yourselves!

Take care,
Erin

It's ironic that I found out about MG and the fact that I could have this disease in MG Awareness Month.

I had been struggling with rapid painless fatigue in my arms since March last year. Then I began noticing my left droopy eyelid and double vision (thought I haven't had enough sleep, that's it). Slowly came the change in voice (got very nasal at times), trouble chewing, regurgitation of liquids in the nose while drinking, change in facial expressions - my smile looks like a snarl sometimes, my face looks tired, so on and so forth.
The nail in the coffin was when my legs got weak. I kept falling down during a trip I took recently. Its June (in INDIA!) and I was traveling. I guess that's what made it so bad.

This is when I Googled "muscle degenerating diseases" and found out that I am not imagining this, its not because of my IT job or my lifestyle (which is not THAT unhealthy when you think about it). It was hard to believe that all my symptoms could fit into two words - Myasthenia Gravis.
Well, this was at a friend's wedding where I was sitting as I didn't have the strength to walk, my phone in my hands and all I wanted to do was cry but I couldn't because I didn't have the patience to make people understand why.

I got an appointment for a neurologist a week after this incidence. And everyone kept telling me to stop self diagnosing myself, that I was imagining my symptoms after reading them, that I wasn't eating right or sleeping on time.
Anyway, I met the doctor the day before, he did some eye tests and muscle tests and told me I had MG. He has written down more blood tests, CT scan, etc to get more information which I will get done tomorrow.

I have a weird feeling because I am kind of relieved that I have a diagnosis (possibly) which I can work towards. But it sucks that its a condition that I will have to live with all my life. I'm just 25 and I love being outdoors, travel, camp, hike, dance - just be on the move in general.

I don't know how this will affect my life. Nobody seems to know much about MG. Your posts have actually calmed me down a lot. Thanks to you man! Its hard to talk to people about it because it is difficult for them to understand what exactly I am going through. I feel so lonely even though I have many people around who care about me and love me.

xx
Harsha

Best I can tell you is keep your body cool. BUT MOST OF ALL LISTEN TO YOUR MIND. Nap every day.
,ike

Yes, Harsha, that is very ironic! Welcome to the forum!

Yeah, 25 is young to have this disease! But it is manageable. The treatment options need thinking over thoroughly, in terms of your age, family history, life goals, etc. Side effects of MG treatments vary and not as simple as a doctor writing a prescription. Imuran, for example, needs to be given after the TPMT test is run. Steroids often cause disease states! So there is a lot to consider, such as a thymectomy.

You are fortunate to have had the disease diagnosed before you had a MG crisis! Though it sounds like you came close. There are many things to know about MG and how to cope with having it.

Curiosity is a normal thing. Doing research in an effort to figure out what might be causing your symptoms is not self-diagnosing! That is being your best patient advocate!!! I applaud you for doing that. I wish more patients would do that—and then work WITH doctors to figure out what is wrong.

Doctors are not all created equally. They have a great deal of medical knowledge, but that doesn't always translate into the type of knowledge needed to cope with a disease. And some neuros only know about MG from that 2 or 3 page spread in a medical book. If they aren't curious about the disease, they might only learn the basics.

Being diagnosed can take a while. Once being diagnosed, there is a great deal of relief to know what had been causing so many symptoms! Yeah, there can be a lot of loneliness. MG can be hard to describe to others. Take some time to learn about the disease at either Home or Muscular Dystrophy Association so that you can address any questions or concerns by others. Well, and to better help yourself, of course!

Keep asking questions. MG has a high learning curve. It is not a "static" disease and can fluctuate from hour to hour, day to day. MG is also not the same for everyone. Take some time to adjust, write down any patterns of weakness for future reference (that might help your neuro too), and just take it slow.

I am someone who doesn't like to sit still, so I can appreciate what impact this disease can have on someone so young (I've had it my whole life, diagnosed at age 42). Don't lose hope, but don't be reckless either. The worse MG becomes, the longer it takes to recover. You don't want to be in an ICU, hooked up to a ventilator (worse case scenario!) only because you just "had to" go out in 80 degree weather to play! Ditto on what Mike said. Stay cool and nap. Seriously. Naps are crucial to mammals as well as to those with MG. We're the only mammals who don't listen to that inner clock and don't take naps regularly.

And, if you need to, dial 911. If you're weak, don't drive yourself in! And call your neuro if you become worse, okay? Holler if you need more information.


Annie

Thanks Mike, I'll keep that in mind. I've been having reduced symptoms ever since I read about it because I listen to myself and don't push myself to get tasks done. But you know, staying in India, its difficult to keep my body cool like 8 months in a year.

Well as if by magic you asked how I was doing and I appeared although a little late in the game.

Well for those of you who remember me (I joined in 2008) I was diagnosed as having seronegative MG in 2007 and then that diagnosis was removed in 2009/10.

In 2011 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTs) and Ehlers Danlos Syndrome (EDS). Ptosis only seemed to bother me occasionally and my doctors put it down to low blood pressure or EDS.

In April this year I felt the best I had in years. I started to increase my activity levels after years of not doing very much. Within 4 days I was having to have a nap in the afternoons. I noticed when I was trying to walk I couldn't move my legs. It was like my foot was stuck to the floor. I had to shuffle rather than walk. I noticed I was having more problems chewing and swallowing. Then Ptosis came back. Initially for just a day at a time. Now however its back, I have had it for 9 days straight.

Last week I saw my hospital consultant (the one I see for PoTS and EDS) it was the first time hes ever seen me with ptosis and pupil drift. I took a freezer block with me to the appointment and performed an ice pack test in front of him. He said "you do know that's a positive indicator for MG". I laughed and said "seen it, done it and got the t- shirt." He told me "unofficially I think you have MG but I am not a neurologist so I can't diagnose you"

So after a 8 / 9 year break of trying to get the drs to listen to me about my muscle weakness and Ptosis, I am back on the hamster wheel of attempting to get diagnosed. You can see photos of my ptosis on my blog - the post is called Ptosis againhttp://http://wp.me/p4zBAs-mU

So as I thought I am back where I started I'd pop in and say hello!

Rach

Geez, Rach, don't get me started! You know how I feel about the doctors along your MG journey!

I still wonder if you may have a CMS. They are quite common in the UK. Oxford can do those blood tests easily!

June really should be MG/LEMS/CMS Awareness Month!

Hopefully, the neuros will take this seriously now. You have so much to contend with as it is. I honestly don't know how you handle all of that on a daily basis!!!


Annie

I would never set foot in Oxford again and that's all I can say about it.

CMS has been raised by my PoTs consultant so we shall see. I never get my hopes up now especially when dealing with neurologists.

Fingers crossed its different this time, seronegative MG seems to be taken more seriously now in the UK.

Rach x