Allen,
Sorry to hear your latest health news other than MG. If I may ask,Why aren't you taking the tests? It sounds to me that she is really being thorough to find out what the cause is. There are some doctors that aren't, so when you have one that is, I think you should take advantage of that. (Just my humble opinion)

Just curious, what kind of diet are you on? Not meaning a fad diet but how are your eating habits? I know that when I incorporated a more healthy diet into my lifestyle, I can feel the difference and am amazed at how much better I feel overall. The weight coming off was an added plus but that wasn't the reason for changing my diet.

I was so sick of feeling so sick. I have found that nutrition does play a key role in how I feel overall.

Blessings,
Shari

I have no diet. That is my lifelong problem.My regular GP, is a health nut, and has put me on strict diets, easier diets, excercise programs, he tries, I get him angry
As a younger man, I was always a big guy, but not really heavy.
But the years and my horrible eating habits have really taken its toll
I would be fibbing if I said I could diet and watch everything. I try and try and try, and since all of my friends, and 90% of my family is thin, its hard when all everyone always wants to do is eat! Eat. Eat. and then Eat. Lets go out for dinner, where do you want to get dessert, does anyone want to go out for ices or icecream, does anyone want coffee and donuts, does anyone want a late night snack, hey, where do you want to go to eat breakfast, or should I pick up some bagels tonight for the morning. Is anyone hungry? Lets go eat, eat, eat, eat, eat.
I blame it on my grandmother. She used to say, eat, eat, theres people starving all over the world, eat, eat.........and thats how I grew up.
My wife tries so hard to help me, but her 120 lb frame allows her eat, eat, eat, with everyone else around me, and thats all they do, eat, eat, eat, or talk about where they are going to eat, where they would like to eat, where we all should eat, who ate where, who ate what, what time are we eating, is it time yet to eat, is it time yet for dessert?
Its a nonstop cycle around me.

I didnt say I wont do all the tests, but shes like an alarmist(right word?), everything has to be done to the fullest, and it irks me, cause other doctors shrug, like, ok, dont think that was necessary.

If I could lose weight(Ive lost plenty in the past) Im sure Id feel alot better, but thats a big IF. Obesity is a mental disorder, I live to eat, not eat to live.

ofcourse, if i could learn to eat right, eating all the time wouldnt be bad if I ate the right foods.

I am a junkie.

As I approach my sixth week, Im noticing my arms and hands are getting very weak by mid afternoon. Im tired by 2 pm, I tell my wife I have no motivation, because I know she doesnt want to hear me tell her the MG is keeping me from doing things.
I need my fix.
Im not sure why the neuro wants to cut my 3 days down to 2, but whatever, I need it.
I never thought Id become so dependent on a drug.
Im optimistic, but this week its the first time since Ive been feeling ok that now I realize I must have a disease.(I always knew from day one when the Neuro-opthamalogist couldnt wait to dismiss me off to the neuro), but I need to be reminded.
Im still feeling ok, but I couldnt use my hands or arms today by 1 pm. They had zero strength in them. Very strange for me. Like a switch was shut off by mistake. when I forced them do something, I started getting pain, like I was straining a muscle, so I stopped.Its just so weird for me, I dont know whats mg and whats something else.
Hope all of you are doing ok these days, Ive been reading here alot.

I can relate to what you say...I only take Mestinon but sometimes before I need to take it, I get a shaky feeling but no weakness or other MG related problems, just shaky...it makes me feel like a drug addict, and I need Mestinon. I have a hard time accepting that I have MG.

When I push myself too hard my muscles do what you descibe, they have no strenth at all and if I push them, I feel like I am lifting weights and it hurts and I have pain for days from pushing myself too hard. It really feels like I injured the muscles and have to let them heal. I wonder if this is because only some of the muscles cells are working so the rest have to work so hard and they get torn or damaged from the strain.

Please be careful, when that happens to me I often have a bad crash that lasts for about three days.

Im getting my IVIG in the morning. I tried to push the nurse to come today but Sunday was a no go for her and I dont want to switch nurses.(I hate change if I can avoid it.)
The card stuff and the bowel movements havent worked out for me so far, after I did the first one, I dont really want to work that close to well, you know what.
I have enough issues, I figure Ill just put them in alphabetical order.
Anemia goes before annoying, so its top of the list. (my wife says Im annoying)
Been really cruddy all this heat and humidity
Ive been putting down so much water, and sweating it all out(I did stick to salt free diet), I had so many water bottles, I blended right in with the homeless guys at the recycle machines with the plastic bottles. I had my big plastic bag filled with bottles, and they had theirs.(Im not making fun of homeless and a source of their income)
Im just not thrilled the neuro reduced me to 2 days as an experiment, but he knows what hes doing. I havent touched any mestinon for around 2 and a half months.

as usual, I hope everyone here is feeling a bit better, and my thoughts and prayers especially are going out for Erin.

Hey sweetheart! Thank you so much! How are you?

It has been wild lately but I am looking forward to my niece coming in to visit..........2 weeks from today!

When you get the time, please let me know how you are!

Love
Erin

Im glad to see you a bit upbeat.

My nurse arrived today around 8:30, things went as usual, pressure check, started the IV. Everything was fine. It was a record breaker in temp today something like close to 100, and the humidity was way up off the charts.
I turned the AC on a couple of hours later, since the temp started to creep up and the house was getting warm.
I was sitting in the den(after my nappy, seems the pre dosing of benadryl puts me out for 30 or so minutes an hour or so after I take it), and noticed I started to feel hot and uncomfortable. The air was blasting, and usually the den is an icebox. It was comfortable, but I just started to feel extremely uncomfortable. I stayed like that for a while, I kept telling the nurse Im not feeling right, she kept flushing the lines, taking my pressure, called my neuro, asked me if I wanted to stop. I went on, I didnt feel sick, just hot and uncomfortable and with maybe 20-30 cc left, which I was about to get up and go to the nurse to tell her Im getting close, I started getting incredible itching.
My head exploded with hives, then my back, my neck, my chest, it was driving me batty, she quickly disconnected me and I took 2 more benadryl.The nurse was clearly worried, concerned. Ive never had a problem before, and she has a patient who is a bigger guy than me, and he passed out on her recently, and she had to call 911, so she was very concerned about my allergic reaction. I think she was more nervous than me, I was so itchy it reminded me of when I had shingles. I never in my life, had hives like this.
I think I scratched off 1/4 inch of skin on my head.
It subsided, the nurse did not want to leave, we were both a bit ****** off the neuros office and pharmacy didnt respond right away, but then the boss of the pharmacy called me, very concerned, the neuros office called, they were all talking but said I have to make the decision if I wanted to continue tomorrow or hold off.
No holding off. Even though I feel a tiny bit itchy tonight, I actually feel stronger the past few hours than I have the past few days.
Tomorrow instead of oral benadryl, we might talk about IV benadryl so it acts faster, or maybe just take the benadryl and hold off till its in my bloodstream working. Was pretty tough for a while, and pretty funny I guess. I ripped off my tee shirt, I had on my boxers on and the nurse was all over my body examining me, must have been quite a sight if any of the neighbors took a peak in, all the windows are open. I survived, IM not discouraged. Nothing changed, not the brand, not the needles, the tubes, nothing.
The Neuro said he wants it infused at a slower rate for now on.

So sorry you got a rash, I know the feeling...it starts with that feeling of heat and then the itching is uncontrollable...I haven't had that for a while, but I still remember and reading your post made me feel itchy. I get this reaction to many medications, mostly antibiotics, and so I avoid them unless absolutely necessary. I hope the next round goes much better.

slowed down the infusion rate today, went off without any problems.
Took a bit more benadryl before also, so back to ok again with it all.

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!!!