Debbie Butler
Forum Replies Created
-
I was diagnosed 30 years ago … the first year was awful because I was used to being on the go all the time. It took me a year to figure out I’m good for 30 minutes and then I have to rest for a bit. The last 29 years have been good because it’s automatic now … work for 30 minutes and rest. Once you get in the habit, you will find that you can still do all the things you did before or things that you want to get done. My washer and dryer are in the basement … so I wash clothes at night before I go to bed and when I wake up in the morning I go down and put them in the dryer … later in the day I go down and take them out of the dryer. You just have to find a routine that works for you. I do just fine now and don’t have any problems. I have MG, it doesn’t have me and I don’t dwell on it.
-
I take Magnesium Oxide 400mg a day for the horrible foot and leg cramps and it seems to work for me.
-
Auto immune diseases tend to run in families, but not necessarily the same disease. I was diagnosed at 37 with Myasthenia Gravis, however there are no other cases in my family. But there is a lot of rheumatoid arthritis and one case of polymyalgia rheumatica. I am now 67. There are families that do have 2 or 3 children that all have Myasthenia Gravis.
-
I was on 100mg a day and gained 50 pounds in 60 days. The first thing I did was stop all salt and all fried/greasy foods. I was on Prednisone for 11 years … finally got off it. I lost 35 of the 50 pounds in just a couple of months. I’m at a good weight now, I was too skinny before. I have stayed off the salt and fried/greasy foods for 30 years and I don’t miss them at all. Everything goes in the oven or the crockpot. Good luck everyone.
-
I have smoked for 50 years, I have had MG 30 years in January. I have never had the flu, bronchitis or any other type of breathing problems, either before or after the MG diagnosis.
-
I have been on Imuran for almost 30 years … started at 200mg a day, dropped to 150mg a day after a couple of years and for the last 28 years am taking 100mg a day. No problems at all. I do have blood work done every 4 months.
-
Hi all, I just want to take a moment and thank everyone for sharing their MG stories. These stories really do prove that we are all “Snowflakes” … all of our stories are different, but similar in many ways.
-
Hi all, I woke up on New Year’s Day with double vision (no I hadn’t been out the night before … LOL). I had an eye appt the next day and she couldn’t examine me with my eyes all over the place. She called a neurologist that was on-call that day and off I went. He walked in the office and I thought I was looking at Doogie Howser. He had on a Looney Tunes tie and matching socks and looked like he was about 12 years old. He had just graduated from Med School and just started working in this practice. He examined me and said he thought I had Myasthenia Gravis, I told him that I can’t have anything that I can’t say. He just laughed as asked my permission to call a colleague. He made an appt for me at Wills Eye Hospital in Philadelphia. So within a week I had a definite diagnosis … they did a Tensilon injection and the vision came right back. I was put on a massive dose of Prednisone and it took six months for my vision to come back to normal. Four months later I went totally limp like a dishrag, ended up in the hospital and had Thymectomy surgery … two months later I felt like a new woman. I have had MG for 29-1/2 years, been hospitalized 4 times for IVIG. I was on Prednisone for 13 years, now just take Imuran. My last IVIG was 11 years ago and I am doing well. My first year was rough, but I learned my limitations … I’m good for about 30 minutes and then I need to rest. I mow my lawn (1/3 acre) and shovel snow in the winter. I think half the battle is having a good, positive attitude. I am 66 years old. I have MG … it doesn’t have me.
-
Someone posted this on a Facebook Myasthenia group. These U Tube videos were put together by Students at the University of Texas.
https://www.youtube.com/watch?v=FeljggjF6Ss&list=PLvJ7HXj75I1qN-_YjbhjfDf9npBaE0AK_
I attend an Osteo/Bone exercise twice a week and a lot of these exercises are what we do.
-
I love to play the guitar and sing old country music. I don’t play as often anymore, but do if the power goes out. I dig out the guitar and play for about 30 minutes and sing to the dogs … LOL. I don’t have the voice I used to have or the air to carry some notes … but I entertain myself and my two little dogs … sometimes they even sing (or howl) with me.
-
First off I would like to say … I have MG, it doesn’t have me. I am 66 years old and have had MG for 29-1/2 years. My first year was rough because I was used to being on the go all the time. It took me a good year to figure out I’m good for about 30 minutes and then I have to rest for a bit. I live alone, mow my own yard (1/3 acre) with a push mower, I shovel snow in the winter. I live in upstate NY in the snowbelt. Last October I started attending an Osteo/Bone class. It’s mild exercise, twice a week for 1-1/2 hours. It’s just moving … no racing heart, no sweating … just moving joints and balance exercises. My doc wasn’t sure if I could handle the class or not, but I’m doing great. I have been on Imuran for 29 years, was on Prednisone for the first 11 years (100mg a day for about 6 of those). I only see my neuro once a year, but more often if needed. I haven’t seen him since the September 2019 right before Covid. He calls me once a year to check on me and because I’m doing well I don’t have to go in for a visit (an hour away). In January 2012 I had a neuroendocrine tumor the size of a quarter in my pancreas, so I had a central pancreatectomy. The surgeon said it was about a 12 week recovery, but it was closer to 20 weeks for me, but I’m doing great. Now I am going through skin cancer on my left hand. I had surgery on my knuckle in December and three weeks ago I had a spot the size of nickel removed from the top of my hand. I’ve been out of the bandage for 2 days and am doing well. My hand and fingers are swollen, so I can’t make a fist. I’m using a stress ball to try to get my hand/fingers working again. All in all, I’m doing great … I don’t give in to the MG. the best thing I can recommend is to keep a positive attitude, do what you can and listen to your body and don’t give up!
-
I have been on Azathioprine for 28-1/2 years. I had a tumor in my pancreas removed in 2012, the doc’s think was caused by the meds. It was a benign neuroendocrine tumor. I am just recently starting to lose my hair after all these years, but I think it’s due to thyroid. I see my doc next week and will have that checked out.
Other than the two things mentioned above, I have had no problems with Azathioprine. I was started on 200mg a day and now I take 100mg a day (for the last 15 years).
-
Mike,
One of the ladies on a Myasthenia Gravis group has a brother (might be 2, I can’t remember) with MG. I belong to several MG groups on Facebook and I don’t remember which group, but I did get a chance to meet her about 25 years ago … she lives in Maryland and I lived in Delaware at the time. Now I am in upstate New York. We have lost touch over the years as I don’t go to the groups much anymore. Forgot to say, she has MG too.
-
I just read this on the Mayo Clinic Website.
Shingrix is a nonliving vaccine made of a virus component. It’s given in two doses, with 2-6 months between doses. The most common side effects of a shingles vaccine are redness, pain, tenderness, swelling and itching at the injection site, and headaches.
I was also told that this isn’t a live vaccine by my neurologist.
-
I don’t get on here very often, but I need to get on more. I like reading all the stories of what each of us are going through. Some are very different, but some are very much the same.
I haven’t had any problems with my eyelids closing, but I still do get double vision every now and then, but nothing I can’t live with. I go sit on the couch and close my eyes for about 15 minutes and the double vision goes away.
Best to you!
Debbie
-
Hi Michele,
Yes you may use my quote. I have never given in to MG until it kicks my butt and I have no choice. As I said my first year was rough, in and out of the hospital a half a dozen times. As soon as I learned my limitations (about 30 minutes) I was good to go. I haven’t had any problems with my MG in I’m guessing about 15 years or more. My biggest problem right now is I am going through skin cancer … in the last 14 months I have had 8 MOHS surgeries and 9 biopsies. More biopsies coming up in about three weeks. The cancer is mostly on my hands and the bandages are driving me crazy, but the MG is behaving itself.
Good luck on your MG journey!
Debbie
-
I had the Moderna shots in Jan and Feb and the third shot in the middle of August. No problems with any of them … not even a sore arm.