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.

There has been tremendous sucess with self administered IG. I had the opportunity to start a pastient on it a couple of years ago, and her life was turned completely around by this therapy. It has to be learned in the Office and then yiou can essentially administer it yourself a couple of times a week. Relatively few Physicians, even Specialists in Neurology who manage many patients with Myesthenia Gravis do not know about it. If your Doctor is not interested in helping you get authorized for it, get a new doctor. Put ** in you search bar and start learning about it. You will be happy that you did.
Cheers!!!

Hi huskerdoc76,

welcome to the forum, are you a Dr with mg or just an interested dr????

So by IG, do you mean immuno globulin??
I would love to have ivig more often, but am only given it if I crash, as my neuro says "its far to expensive and hard to get hold of" ( I live in Australia) grrrrrr he doesn't see me struggling everyday

Great to see you around here, looking forward to seeing more of you
Kate

home self treatment was not brought up, Ill ask the neuro about it.
I had only 2 days this time, not sure how Im feeling. I feel ok, but with the 100 degree temps in the NE every day this week, its hard to tell if Im lethargic because of the temp or the ivig hasnt kicked in full blast.

Being from Ma I have been thinking the same thing... Is it the heat or the MG

I had an incredible nights sleep last night and today, in 92 degree temps, I spent the bulk of the day outside working, taking cooling off breaks, tons of water, but I was ok, a little tired.


Im seeing the neuro this week, and Im going to insist they send an IV pump for my august treament. probably wont have any luck, but doesnt hurt to ask.

Hi Allen, I am struggling with many of the same feelings. I had a flare in March that took more ability away including driving even the short distances I could. I found a great fella that counsels people with chronic pain and diseases. I cant get to him now because I cant drive but he was a very very kind man who did help. It is a massive adjustment. I raised my 2 girls mostly alone. I went to college later in life. Now to suffer so much loss is beyond words.

On the TV show Rubicon there was a phrase the other nite that gave me pause. It was about fear. Roughly he said there's the kind of fear that makes you dig in and try to find the answer, doing every thing you can and there's the kind of fear that paralyzes you. I can get paralyzed at times but mostly I dig and move forward knowing there is more. There is an answer that will help me live with this.

I dont do well with being in bed either, much less a hospital bed. Even on the job I was the kind of person who needed to get up and walk a bit or just get distracted every 20-3min. I wouldnt do well with 5 days either. I wonder if you were open with them about this they could give you something to tamp down the urge go. Actually I have great success with acupuncture to quiet this part of my nature.

Annie59