Hi Rumpled!
 

Hi Kate!
 

Hi Dottie!
 

Hey Dottie, I'm actually in Singapore right now, and MG is totally unheard of here. There are no associations here and doctors here are just not familiar with this. Haven't been able to find a neuro who is trained or equipped to handle this, so am still searching. But there's always silveer lining when days are gloomy, so I'm glad to say that have managed to locate some trained neuros overseas who are willing to see me. Am flying over soon to see what they say. Wish me luck!!!

:D

Becky!
 

Hey Becky, its always so lovely hearing from you. =D My joints don't really lock up, its just that I find myself having difficulty controlling them sometimes, as its so wobbly. Congrats on your recovery!!!! You're a blessing to all of us here!

Hi again..........
 

I am still feeling pretty good., tired in the evening and the double vision is there when I am tired., pool is in., can't use yet.,, trying to get the steps going into the pool safe., so the contractor had to bring another set., between my husbands vision and foot and my clumsiness( my husband says I am an aflac commercial ) and MG it has to be safe....learning how to backwash and vacuum pool and chemical stuff...the contract had put a french drain and pea gravel around pool., he found out last night that would void the warranty of the pool because they consider that back fill., so he has to remove it all....oh my., I feel bad for him as he had another job to do today., so he sent his men there and then he will be here later., the deck looks good., they have to finish that., anxious to go in and relax but no can do till they are done . The weather has been nice here. Sorry to hear that so many of you are having some bad times right now with MG, you are all so great, you have helped me so much., I wish I could make the bad times go away for all of you., Take care and GO GIRL, GO GIRL........LOL

Wow you go away for a couple of days and the place is flooded:D

Hi Rumpled, good to see you again:p you have mg again, oh how wonderful for you:rolleyes:

I had a great time out at my sisters. Today we went shopping, and I was walking around snarling(you know top lip currling up) wondering why I was doing it. It all of a sudden hit me, my eyes were drooping, and my whole face was trying to "be normal" and keep my eyes open. When I realised this I relaxed and just let my eyes droop, and felt a whole lot better. This was all to do with how cold it was, just 13C(55F) Yeah I know its not as cold as some places:D, but considering we have been having balmy weather for the last couple of months it was a shock to the system!!

Iam heading off again:rolleyes: up to my Aunties place, she and her hubby have a dairy farm up near Perth. I'm taking the train, as long car trips are a bit scary, if my eyes start closing!:eek: I'm really looking forward to spending time with her.

Hi Kate,

Have a wonderful visit with your Auntie...don't step in anything! hahaha

Take care,
Pat

Third time jumping in:

This forum is fantastic. You are all a joy and encouragement. I wish I had more wisdom to interact in the conversations. I usually log in, read at midnight after work. Having absorbed so much information from ‘listing’ to each of your stories, I am now prepared to go to my first yearly appointment and ask for an anti depressive.
More of my MG journey ;
Out of curiosity, I went to a local MG support group meeting in November and was delighted to see 20 - 25 people who visibly gave the impression of being healthy. I could not tell who had MG and who did not. Essentially, I liked that. I chatted with a Nurse (who accompanied the featured speaker) she was enthusiastic about the MD/MG clinic at Emory University.

I listened to the speaker as he explained what was going on at clinic and encouraged us to get involved. (Note: I listened to this doctor on Neurology Podcast and was optimistic with his position of treating MG). He explained about the drugs and treatments that may modify the immune system and how ongoing drug management might influence MG. Apparently Emory is involved in clinical studies and data collections for MG in relationship with MD foundation.

After the presentation, I personally discussed my MG and goofy immune system with the lecturer Doctor. I explained to him that I was only taking Mestinon. He replied that if and most likely, when, I end up in crises I will have wished I had been on immunosuppressant drugs. He again encouraged joining clinic. I was visualizing tube down throat and the whole MG crises thing (you guys have painted a vivid precise scary picture).The moderator of the event overheard my conversation with the doctor and kindly and respectfully makes clear to me that she had been on ONLY Mestinon for 25 years and doing just fine (she looked exceptional well).

I was anxious. I was on overload. I did not say good-bye, made a bad-mannered, quick and hopefully unobserved exit.

A few days later and less emotional, yet still perplexed by potential new options, I telephone the nurse :) at neurologist office and explained “MG clinic” and my dilemma. She listens carefully as always, tells me she will consult with Dr. and call back.

Quick call back slightly encourages clinic with big overtones of caution using other perhaps unneeded strong drugs (Note: From the on set, I let the doctor know that I was not much on medication). Therefore, I gave myself a wait and see approach.

Now I am waiting, working about 60 + hours a week over 6 days. Pacing my Mestinon and me carefully over 6 days and crashing on the seventh. My home is a mess; social life has disappeared. Quality of life is zilch. Enter depression - or my ADD has overtaken ability to concentrate on anything other then coping daily. Maybe both, I can usually get a handle on the ADD stuff and I can usually handle bumps on the emotional stuff but I cannot seem to do either with the MG interference.

Interestingly over the past 5 days, almost all MG symptoms have disappeared. No Mestinon for 3 days. I went for a (reminiscent of pre MG) energetic over a mile walk Wednesday night, I was euphoric. I know MG is incurable, I know it can go into remission, I am caustically optimistic. Nuro appointment this Tuesday .

As I read this forum each day and learn your stories and struggles, I am moved to tears.
Blessings to all,
Christy

Note on messy house:
After sweeping patio with the leaf blower, I had the idea to dust the baseboards inside the house with the blower. Do not try it; it is not a good idea.
Note 2, I liked watching the Utube interesting MG videos.

Today is still a good day!
 

I went back to work on Monday....and worked 4 days....and took today off....I did not want to push myself to working 5 days this week!

I had my massage on Monday evening....but I drunk tons of water, took a cool-warm episom salt bath, and went to bed. I felt tired that next morning...but I felt more relaxed. But,my leg muscles were very tired...like I had been walking all night. :winky:

Relaxed, great feeling massage....vs....tired muscles the next day.....
I sure did enjoy the massage!:rolleyes:

Really, my tongue feels like it has gotten fatter...and the inside of my mouth/ cheeks have changed --either fatter or more relaxed feeling...and I am always sooo worried about my breath....When all of this started, I was so worried about oral cancer or throat cancer.....but my dentist said that my gums, tongue, everything looks healthy. Thyroid is healthy and normal too...thyroid uptake did show mild hyperthyroidism...but nothing major..

I didn't realize that this could all be related to occular MG..