Newly Diagnosed, Clinical Only
 

Hello all. I've spent the last 8 yrs searching for a dx. I suffered a head injury at that time and in less than 2 weeks I started having dbl vision. My neurologist assumed the cause was my recent head injury and only pursued that option. The frequency increased to the point that I had dbl vision with any kind of physical activity. I was an avid golfer and played 4 to 5 times a week. Before long, in addition to the vision issues, I noticed a marked weakness in my arms and legs; troubling balance and coordination as well. This became such an issue that I finally quit the game a year ago. In addition, I had to quit my participation in a performing dance group. I've gone from dr to dr ( including Mayo) with no satisfaction. Finally, I saw a neuro opthamologist and within 10 minutes he suggested MG. My blood tests have been negative as well as a repetative stimulation test. However, my new neurologist and neuromuscular dr agree that I have MG. Due to my age, 66, and the fact that I don't have ptosis,
I don't fit the usual profile of most MG patients. Maybe this is why a MG dx was overlooked for so many years. I'm so excited to have found this forum, the support and sharing of experiences will be invaluable.:)

Welcome to the group. Most MG'ers find diagnosis a very long process, unfortunately. What sort of treatment plan have they started you on? I am double sero-negative diagnosed by single fiber EMG. I am on 20mg of prednisone, 2000 cellcept and about 660 of mestinon a day and pretty stable.

Hope all is well
kathie

You and I have much in common. I have been dx'd (clinically...tests all neg) for roughly 5 years. It all began when I couldn't control my golf swing after 14 holes or so. Long time getting a dx....but Mestinon works very well for me.

I still play golf - but not as many times per week - and I never know if it will be 7 or 12 holes before my arms start to let me down. It can be frustrating ... but I am really lucky compared to so many others on this site.

I guess I just wanted you to know that there are some MG'ers who can still do a lot of physical activities - but not for as long or as well as they used to. (of course I always blame the MG - advancing age couldn't be a factor, could it?)

Treatment
 

Hi. My symptoms started to accelerate last August to the point that I couldn't walk without a cane or assistance. I could barely talk and swallowing became an issue. In mid November, I was admitted to the hospital with small bowel obstruction. Upon admission, I informed my dr's that I had a tentative dx of MG.
They rolled their eyes. During surgery, I quit breathing and they became instant believers! They started me on mestinon , 60mg 3xdaily. 30mg prednisone and 1 round of IVIG. Over the past few months, meds have been reduced to mestinon, 60mg 3xdaily. My neuromuscular dr wants me to try mestinon timespan feeling I'll do better. Also, he wants me to resume prednisone, but just 10mg daily to start.
Mestinon has addressed a few of my symptoms but not all.
I still have a problem with dbl vision with phys activity. Talking and swallowing are still an issue, however, I do better immediately after taking med.
Just today I've developed cramping and a stabbing pain in my left hand.
I HATE MG and the dr tells me I have a mild case. I can't imagine how others cope that have serious MG
Thanks so much for responding and sharing,
Jan

Advancing age?
 

Hi, thanks so much for your response.
Yesterday, after a 15 month hiatus, I played golf (just 11 holes). I've lost at least 30 to 40 yards on drives and fairway shots, due to muscle weakness I'm sure. However, I got off the first tee, which, as you know, is every golfers nightmare. Haha. As for advancing age, I played with an 84 year old woman friend and she shot a 46 on the front nine (a regulation course). Needless to say, she's my hero! I plan to rejoin the women's club and re establish my handicap. I'm determined not to let MG win.
Again, thanks for your response and I hope you're doing well.
Jan

Hi, Jan. Welcome.

My Mom is 82 and she still golfs, although she does not have any diseases!

Adapting to this disease is not easy. You might want to consider only 9 holes and golfing when it's cooler, like in the morning. Heat will make MG much worse. You could also wear a cooling vest or hang one of those cool ties around your neck. You do use a cart, right?! ;)

One of my neurology pet peeves is when they say that someone's MG is mild. Horse hockey!! MG is all about weakness upon exertion. Most MG patients see their neuro when they are fully rested! Of course we're mild-ish when we haven't been doing something!

The hallmark of MG isn't rest-ability but fatigability!

Do don't let that "mild" label fool you into thinking that MG will stay that way. If you push MG, it'll just push back. You already know how scary it is to have it get worse, and that's kind of a good thing. You know the limits of this disease then.

How is that "cramping and stabbing pain" in your left hand?!!! Are you left-handed? If not, that can be a sign of a heart problem! When was the last time you had an ECG or a cardiac work-up?

Not every new symptom is an MG one.

It does really help to have a good pulmonologist, too. They can check your baseline breathing on tests, like MIP and MEP, and then compare those to ones if your breathing gets worse. They work in tandem with neuros in a hospital, if an MGer has a crisis.

Keep asking questions, and learn as much as you can. There are also drugs that are relatively contraindicated in MG (see Panorama's recent post).

I hope you'll be able to golf and enjoy your life, even with MG.

Annie

Hi Annie
 

Annie, once again thanks for you response and kudos to your Mom. Until I quit golf 15 months ago, I walked the course 4-5 days a week. I realize I'm no longer capable of that so I will take a cart in the future. The stabbing pains I experienced happened the day after I played last Thursday. They only lasted 1 day, thank goodness.
I have a great pulmonologist, in fact he was instrumental in getting my appt moved up with my neurologist. I live in a small town and it sometimes takes up to 3 months to see a dr., especially a specialist.
I appreciate your suggestions and I will follow through. I actually see my neurologist in 2 weeks.
Thanks, Jan