Im sorry you might have this disease.
dont let stress eat you up, it will make you feel worse.
Im 55 and didnt have any sypmtoms till a little over a year ago, mostly ocular.
Im sure there are alot of women in your age bracket that can relate to you better, having similar symptoms, similar life styles.


I let it eat me up for months, depressed, the feeling of hopelessness, and it was all for nothing. I found help, in drug form, and I feel close to normal most of the time now.
this is a great place for support, so ask all you want and youll get alot of great advice.

Welcome Laurie,

I'm a 57 year old female who was diagnosed last July. Mine was ocular with double vision and droopy eyelid. I tested positive for the ACHR antibody so was put on medication right away. Had a CT scan which showed a growth and had my thymus removed in December followed by radiation treatment because the pathology on the thymoma was in the "gray" area. Never had the EMG or SFEMG tests. I did have some breathing and chewing, talking problems for a brief time in November, but now I'm doing great (keeping fingers crossed).

For a lot of people MG is a journey to discover if in fact you have the disease and then to get the right treatment / medications.

I wish you well and hopefully you can get a definitive answer as to whether you have MG or not.

This is a great forum and I've learned so much since I found it.

Again, welcome.

Kathy

Im preparing myself for a car crash.
I have not swallowed a piece of mestinon in 50 days. Yes, 50 days.)49 days today, fifty tomorrow. sorry, I recounted. My neuro has me keeping a journal and he made it clear Im not to miss any posting in it regarding stress or weakness. he wants everything recorded, so every night I write how I felt and note any meds.
Although my weight is torturing me in the heat, I am outdoors(under shade ofcourse) working my hobby, 4-5 hours a day with breaks to cool down.(my wife knows never to shut the AC in my bedroom office, its my safe room in the heat, I have to live with the expense)
I drink alot of water, then drink alot more water.
Im seeing my neuro tomorrow as well as my GP, so I can discuss my concerns with my veins, not that I think the IVIG has anything to do with it anymore, but its worth mentioning.

50 days, and most of those Im feeling pretty good. I get the hit the wall thing when I overdo it, but I cant tell anymore if thats Myasthenia or just old age and weight.
My vision has gotten worse, I notice in the last 6 months Im not reading the guide on the TV screen as well, or the fine print on the lighted wall signs or menus. I was in Panera's today, and could not read the smaller print under the larger print. Something I never had a problem with.
I notice whenever I drive more in the sun, even with strong good sun glasses, my eyes get weaker.
Im going to discuss this with my eye doc, but overall, I havent felt this good for a year.

Im so nervous if this Gammagard stops working, Im going to be in for one huge crash.
50 days, no mestinon. If I could drop some weight, Id actually attempt to hit a few tennis balls again, even if it tires my eyes quickly and drains me fast.(honestly, I dont think my eyes move fast enough to follow a ball, but its nice to feel healthy enough to want to play)
15 minutes hitting a tennis ball would be worth an hour of rest for me. I miss it greatly.
I have a bit of a hard time posting here how well I feel, I know so many of you suffer, and Tyson, I hope youre doing ok buddy, I know youre struggling and I know it really sucks. I hope the rest of the group is having some good days.

Allen, you have NO reason to feel guilty about posting. This is wonderful news on your end! Im so happy to hear you havent had to take any mestinon in 49 days, thats amazing.

I will too, one day get to that point, and i thank you for your sympathy

Thank you very much allen, means the world.

Hope you continue to feel well.

GP visit and neuro visit today.


MY neuro is reducing my ivig down to 2 days instead of three.
Hes not sure , but says we still have to experiment and find the exact right dose I need.
He doesnt feel one day a month is right for me, although he has patients on that regimen.
I showed him a picture of the bedroom set I just finished making and explained this is the reason I want to remain as healthy as possible, to pursue my hobby. We talked woodworking a bit, then he sent me on my way, reminding me on the way out that I do have a disease, and I have to respect it, to be careful working in the high heat and humidity outside, and not to overdo it on any day. Even if Im feeling very strong and having a good day.
IM having doppler done on my legs, my GP and Neuro agree IM having issues with veins in my legs and a bit of edema. Not related to IVIG,, just an age, weight issue.(I had to bring it up to my gp, since Ive been feeling a bit of pain and tingling related to the above the ankle area, I dont want to complain about any other health problems to any of the doctors)
Im feeling pretty good these days overall. Even working alot in the heat.
Hope all of you feel good today.

That's Great News Allen!

Just remember not to overdo it like your Neuro said. Especially in the heat. MG can come on quickly because of overexertion in the heat. I would hate for you to have a setback after doing so well for so long.

I pray that you continue to improve and that you also find what combination will work to keep you feeling so good.

Blessings,
Shari

Terrific news on the MG Allen!!

Hope they can help you with your legs. Before I was dx'd with MG, I was having tingling and swelling in my right leg until I eventually developed an ulcer. Long story - but after the dopler and PVD/PAD tests all were normal - my doc sent me to a lymphedema clinic to get 'decongested'. With that done, I wore support hose and life went on.

Here's the ringer...two years later when my neuro dx'd MG, she told me Mestinon would improve my lymphedema ... maybe even eliminate it. Turns out some MG'ers have lymphacytic hyperplasia which is caused by the inability of our muscles to properly support our lymphatics. Without muscle tension, an unsupported lymph system can allow fluid to accumlate.

She was right - my legs never hurt or swell anymore like they did before Mestinon!!

Sue

I worked last night in my woodshop till around 9:15 pm after working all day till 5:30 pm.
I worked 4 hours today with temps up near 85 and humidity up near 70%.
and just another hour after dinner changing over some machine parts.

I am living proof whatever they are putting in that Ivig works.

Last year, I couldnt tolerate warm temps at all, and nightime, Id shut down by 7 pm and had a hard time focusing my eyes, not to mention tired at night.
I dont have to post only when Im sick or go to the doctor.

I'm so excited for you Allen!!!!

It's so wonderful to hear that you are still doing so well with IVIG. I wish you continued success on your MG Journey.

Thanks for taking us on your ride! Please keep posting!

Blessings,
Shari

Im not going anywhere.
I have a new young (and beautiful I might add) physicians assistant or Nurse practicioner, not sure of her title, and shes very aggresive.
I had the doppler of my legs, no clots, woohoooo, but she pulled me into her office to go over my blood work. Now she wants me to scrape some poo onto a cardboard card a few times. Im anemic, and we all know theres always blood in the urine or the poo poo. Its just the way people are. I dont think I want to head off for the tons of tests she cant wait to send me on.
I wonder what will happen when I tell her no, Im not taking any more tests.
My sugar level is slightly elevated again for the 2 second blood test in a row.
Not good news. Ill try to watch the starch intake.
If I could sleep, Id feel good.