[Ronald E. Clever]

I have a GP that oversees everything but my MG which is handled by a wonderful Neurologist.  I am lucky to be close to John Hopkins Hospital in Baltimore and my neurologist is on staff there.  All of my doctors get results from blood tests, MRI’s, EKG’s and such including my cardiologist and pulmonologist.

[Ronald E. Clever]

I consider myself lucky when I read some of the responses here.  I have only been hospitalized on one occasion so far and that was for respiratory distress.  Like the person before me I am constantly nervous about breathing and swallowing to the point I bought myself a large recliner to sleep in.  In addition to MG, I am extremely overweight since all the meds that I take make me hungry.  I also have asthma and sleep apnea.  If I sleep upright it helps a lot.  I worry about going to sleep and not waking up.  Some nights even in my chair I wake up gasping for breath.  It is a constant fear.

[Ronald E. Clever]

My house, and I say it that way, because I pay the bills even though my sister and nephew live with me since the pandemic lost them their jobs, is always kept at 66 – 68.  I would rather pay the extra money and be comfortable than not.  Luckily for me they don’t mind.  I am thinking of getting one of those personal fans that fit around your neck.  I think the extra breeze would be welcome on very humid days.  Living on the East Coast it really is the humidity that wears me out.

[Ronald E. Clever]

I come from an older family so much of the major life events happened when I was younger.  I have a group of us that used to meet every weekend or every other weekend just to keep in touch but then the pandemic happened.  With things loosening up they are starting to get together again and I just don’t feel safe yet.  They understand but I initially thought maybe I was being too careful but with the way things have gone I am grateful to still be practicing safety guidelines.  I don’t know when I would feel safe again.  If there were major life events I would have to stay away from them also since for like funerals there is a good bit of walking and standing and I cannot tolerate that.  My legs are too weak and with back problems it makes it worse. MG has changed my life in the way I socialize.

[Ronald E. Clever]

I have recently applied for handicapped placards. I had been using one from a friend of mine but finally realized I needed my own. Do I fell bad for doing that? No. I am 60yrs old have MG and the only other person in my household is my 70 yr old sister. So when we go to the store in this 90 degree or better heat we need to be close to the door. I also have asthma. None of my ailments are visible and we as a community should realize that when seeing others park in a handicapped space. I for one do not judge.

[Ronald E. Clever]

I have been experiencing watery eyes and just thought it was pollen. Now I am gonna pay attention to when I take my mestinon and when my eyes get watery. Thanks!

[Ronald E. Clever]

I have cramping but the worst is in my arms. I take 60mg 5xday. I have been just riding it through but I will talk to my Dr aboutsome if these suggestions. I can’t do the salt because of high blood pressure but the pickle juice might work even though I hate pickles. I thought my Dr told me to stay away from magnesium but I will have to double check.

[Ronald E. Clever]

Tim,

I am on Mestinon 4 times a day, 30mg of Prendisone, 1500mg of Cellcept and 2000mg of IVIG over 2 days every 4 weeks.
I am not sure how much the pills help but I do feel much better after the IVIG and that is coming up this weekend.

What do you mean by “cheat” or ignoring triggers?
Even though I have had MG for many years I feel as if I don’t really know that much about it.

[Ronald E. Clever]

Rina,

I have the same symptoms as you.  It started with double vision which I have permanently now.  My glasses have to be fitted with prisms.  Weakness in my arms and legs it a daily battle.  I try to get as much done at work in the early part of the day since the afternoons are tricky.  Also the extreme fatigue I experience interferes with my job and I have to be careful since I have fallen asleep at work several times.  I cannot bend over to help with our dogs any more since if I end up sitting on the floor my legs & arms are too weak to pull me up off the floor and I am too big for anyone to help me.