Hi all,

I'm so glad I found this forum. I was just diagnosed with MG this month. At this point my sypmtoms are minor (only ocular) compared to a lot of you, and for that I am thankful. My diagnosis was swift and actually I had found out about MG by doing a google search for droopy eyelid + double vision before my first doctor's appointment.

My story / background:

Female, 56 (well almost 57) -- aren't I old to be getting this?
Homemaker (took "early" retirement 8 years ago after working in office environment for 30 years)

First noticed "eye" problems on July 2 while driving to do some shopping. Had hard time focusing and almost called my husband to come get me, but I didn't. While I was in the first store, I felt like I was a bit drunk and everything around me just seemed weird. I just thought I had overdone it on the computer. I had just been to the optometrist for an eye exam the month before and everything was OK. Even did a trial of the multi-focal contact lenses, but didn't like them.

Over the weekend the vision didn't improve and I noticed that my right eyelid would droop and double vision was definitely there. I called to get a re-exam with the optometrist which was scheduled for 2 days later. That morning before the appointment I had found MG on my google search and thought "that's me." I printed out the fact sheet for occular MG and put it in my purse. My exam showed no problems with my eyesight (when I could focus), but she wanted me to see a neuro opthamologist. I told her I was scheduled to leave on an 18-day vacation that Saturday (2 Alaska cruises). She got me an appointment for that Friday (one day to spare). I asked her if it could be MG and she didn't say yes or no.

At the neuro opthamologist appt. he said he thought it was MG and ordered a blood test for acetycholine receptor antibody. He gave me a recommendation for a neurology group to see for a neuro evaluation. He hedged on whether or not I should take my vacation. I told him we had trip insurance and that if we cancelled he would be required to fill out a physician's statement for us to get reimbursed. He said no problem. If we were only going to be gone a week and be land-based I probably would have gone, but to be on a cruise ship for 14 days with stops in small Alaska cities, I just found that too unsettling. So we dediced to cancel.

The following week I got the results for the blood test and they were positive. I still had almost a week before my visit with the neurologist, but at least there was no question.

Met with the neurologist earlier this week and he has put me on Prednisone 40mg (4 10mg tablets) and Mestinon 60mg 3 times a day. I started on them 4 days ago. The first day I took them I noticed a vast improvement later that day in both my double vision and eyelid droop. A miracle I thought! I do notice that my eyelids twitch from time to time. I drove yesterday for the first time in 2 weeks -- just about 3 miles to church and back. Still don't feel comfortable driving longer distances, esepcially with lots of traffic.

The neuro also ordered a CT scan for thymus and blood test for thryroid (THS #4 I believe). I had the CT scan this past Friday and should have results in a day or 2. Keeping my fingers crossed there is no problem with the thymus.

Sorry this is so long-winded, but it's just good to get it all out. I have been keeping a daily diary with symptoms, doctors' appointments, etc., so that I don't have to rely on my memory.

I haven't read this entire forum yet, but feel like I already know some of you. Some of you are dealing with so much more than I can even imagine, you are my heroes.

Kathy

Kathy,
Welcome to the best MG site on the web. You are not to old to get MG. I am glad that you were DXed so fast. most of us took years, but then 18 years ago they just didn't know much about MG. As for the Thymus gland, I did not have a thymoma but they removed it anyway and I went into a full medication free remission for 17 years. {My MG is back now} My MG is mostly in the eyes and arms. when your vision starts acting up, tilting your head helps. You will meet some wonderful peopl here.

Kathy,
I agree, you were lucky to be diagnosed that fast. I was diagnosed pretty fast but with questions....my tests have been negative..but clinical symptoms have be dead on the mark! The neuropathy in my legs have thrown everyone for a loop...don't have a clue as to why this has occurred at the same time. Mestinon is good stuff!

Since going to Maryland for a second opinion, I have started (on the advice of the doc)...a daily journal of graphing my fatigue as well as graphing the times of my dosages of Mestinon. This has helped me to keep track as well. I have found a great website Livestrong.com that I can do a online food intake journal as well. I can graph my weigh and my progress with that as well.

I am determined to try to understand this disease better and improve my overall health at the same time!.....The diet part is really hard.......I have been using caffiene to combat the tiredness....and now I am really feeling the fatigue part of MG...I am 9 days completely caffiene-free. .Honest to God, I was drinking about 6-8 sodas a day...high in sugar and high in caffiene just to make it through each day!

Hi Kathy,

Welcome to the group! I too agree you were diagnosed very fast...good for you! It took me 2 years, which is still rather fast compared to many here. I have both ocular & general and had a thymectomy in Nov. 02. I take only mestinon, but may reluctantly starting pred soon...haven't decided yet. The twitching you mentioned is a common side effect of the mestinon. Mention this to your neuro the next time you see or speak with him. Feel free to ask any questions you may have. Everyone here is very supportive and helpful. Take care.

Hugs,
Pat

Thanks, Pat, Cricket and Joanmarie for the warm welcome. I almost hesitated posting since my symptoms are so minor compared to others suffering from MG.

A question concerning Mestinon. I'm supposed to take it 3 times a day. I was taking with meals, but noticed my eye was acting up when I got up in the morning (maybe because it had been since dinner the night before when I took my last pill). Yesterday and today I am taking them 8 hours apart to see if things are better in the morning.

I'm beginning to see living with MG is all about seeing what "works" and making adaptations. I had already learned before starting meds that tilting my head when watching TV helped, as well as closing my right eye. Have also found that looking downward such as when cooking, laptop compupter vs. desktop monitor helps a lot.

Kathy

Hey Kathy,

All the things you are learning, we did too. You will learn more as you go along. As far as the mestinon goes. I would call my neuro and let him know what you wrote here. He may increase it by one more a day or prescribe a time release at bed time. Please don't increase it on your own. Too much mestinon will make your symptoms worse. It's good that you take it after a meal. If you have stomach issues it helps a lot. I am so glad you decided to post. Everyone here has varying degrees and symptoms of MG. Always feel free to ask any questions and someone here will be more than happy to answer them. Looking forward to hearing from you more. Take care.

Hugs,
Pat

Hi Kathy,
You have to find by yourself what is the best shedule for your Mestinon intake, your neuro is not in your shoes...Vary your intake and observe the results!
I take mine at 9am-1pm-6pm and 11pm, always with some food and beverage, mealtime or not.
Do you know that a special kind of Mestinon does exist, Timespan? It comes in 180 mg tablets which can easily be broken in two, I took half a tablet at 11pm for quite a while, but I do not need it any longer.
Timespan has a slower release rate the the normal Mestinon , it has been designed for passing the night and wake-up periods without too much problem.
Maurice.

Hi Kathy,
It's good to meet you. This is a wonderful place. Everyone is great and you will get lots of good information. I am 48 and was just diagnosed about 5 months ago so I am still learning too. I have ocular MG and general MG. It took about a year and a half for me to get a diagnosis. I am taking Mestinon during the day, Mestinon Time release at bedtime along with Imuran. My neuro did not want to start me on steroids if we could avoid. However, I do not have double vision all the time. My vision gets blurry when I have been at the computer too long. My left eyelid droops every day at some point. Both eyelids droop at times. I only get double vision when he does the upward gaze test so far. Glad you have found this place, you will really love it. Hope you have a good weekend. Take care.
ckitty