Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Not having a good day(s)

Hi all,

I'm pretty bummed out. This double vision just won't go away...its probably going on a month now that I've had it nonstop.

Yesterday I went into work for a meeting with six of the program directors in one of our units (this is unit which I had actually hoped to work in eventually). I sat in the back with the rest of the staff from my branch and I got an attack from the myasthenia and wasn't able to open my eyes throughout the meeting. I'm sure my boss thought I hadn't had enough sleep or something. I've already gotten in trouble for trying to get out of going to some meetings, as I know this is what happens.

This morning I woke up and felt too weak to make it into work so I called in, said I'd be late, and went back to bed. I managed to get out of bed around 11:00 and get some food and take some mestinon, which I hoped would help get me into work. I called my boss around noon and said I couldn't make it. Appearently I told him a couple hours on the phone, although I can't recall what I said. So he's pissed that I didn't call in earlier.

I'm not sure how I can have a career and not be able to attend meetings or read. My neuro doesn't want to give me steroids (which appears to be the only treatment that works on most people) until after I have surgery, but I'm thinking I should get a second opinion since there is a center for this a couple hours away.

Jeff

A second opinion might be good. When are you having the surgery? Can't you have any steroids now? It seems like you are really getting screwed here.

He says that if I'm going to have the surgery, I have to wait until afterward. And if there's a chance I can be cured, I think I should have the surgery.

But I think I really need to find another doctor. I've been having trouble breathing lately, too. From everything I read, this is a hallmark of the disease. But when I asked him about it, he said my breathing trouble sounds different than the myasthenia breathing problem. I'm not really sure that it does, and it gets worse on bad days and when the mestinon wears off...but he says its not related.

I just called the myasthenia gravis center in Baltimore which it turned out to be one doctor, but I'm thinking I'll have better luck at a teaching center. They said they'd call me back once they get my records (so I guess I'll need to take some time off work to get the medical released signed). I asked someone at work whether I should get the FMLA paper work signed and they said that my boss would probably see it as a slight against him, and I should keep it at his level. I'm not really sure which is the better way to go...really what good is a programmer who can't actually see, if I tell him, I'm not sure I'll be there long.

Jeff

Hey Jeff hang in there. DO the best you can to keep your boss semi-understanding. I am going through to a lesser degree the same issue. Near sighted in right eye, far sighted in left eye, but a clearly ignored (by me) cataract in my right eye makes reading brutally difficult double vision and only can see with my right eye about an inch from paper or monitor.

Lefft eye at that distance is useless. All I do all day is read so its exhausting. Court calendars and such are post at a distance where I can't get close enough to read them. With my bent posture when they are posted at any elevation it was already a feat to contort to se them. Often makes me placed in a difficualt spot. For now I keep pushing on. My surgery for cataract is end of NOvember. Until then every day is a grind.

What you are going through is more difficult so I can truly empathize

just wanted to send hugs and thoughts, so sorry to hear how difficult things are right now

I'd do the fmla papers. Your attendance can be used against at their discretion otherwise

Hang in there Jeff!

Hopefully boss is understanding and this can be corrected very soon.

Tim

Jeff, the FMLA papers are a must right now if you haven't done it yet. I do hope you boss knows about all this. If you are having surgery within the next month or two, the steroids are out. If you aren't on the schedule, a short course would be fine. You should be off any steroids for at least a month before any surgeries.
Hang in there and get that second oppinion
Cindy

Jeff, just wanted to send you a hug and add my shoulder to the load.

Hugs,

Hi all,

Thanks for all the . I wish I could say things were going better, but I woke up and couldn't move today...literally. I ended up making it into work, which was a mistake, but I'm running out of leave.

I went to PT since I forgot to cancel and I thought the stretching might help some. She called the student over to show her what someone with myasthenia looks like on a bad day (I do what I can to help).

I've been looking forward to crashing on my bed all day, but I get home to see a pumpkin was thrown at speed from a moving car through my Dad's back windshield.

Then when I called my parents (after the police left) and told them what happened to the SUV and how I felt, my mom said she thinks the myasthenia attack was psychological. Wrong thing to say! If she was here she wouldn't say that. I can't exactly fake my muscles deciding not to fire.

I made an appointment with the neurologist for tomorrow. Hopefully we can just skip to the steroids and push the surgery off until things are better under control.

I hope things can only go uphill from here.

Jeff