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

Oh Jeff, no, you are not having a good day. I can't believe that your mother could say something like that. Perhaps she is just wishful thinking because she does not want to face up to you being seriously ill. I am so sorry. As a mom, I know I couldn't ever say something like that.

I just don't understand why kids think it's OK to through pumpkins at Halloween. Those kids need an attitude adjustment. It's too bad that you don't know who did it.

I'm hoping and praying that you will feel better.
Donna

They've been destroying mailboxes the last few nights. If they keep it up, hopefully someone sees their tag number.

jeff,

sorry once again to hear things are still not so great.

as for those kids, we had teenagers going around the neighborhood, breaking into cars, stealing GPS's, eventually they start bragging, or get brazen and are less careful and usually do end up getting caught. in our neighborhood's case, it did catch up with them, kids from a neighborhood not too far away who knew one of our neighbors so knew our neighborhood i guess. i do hate seeing others damage the property of others, so totally disrespectful.

Aw Jeff, what an terrible way to end a miserable day. As far as your Mom is concerned, I think a sit down talk with your parent is a must. Sounds like she has some denial to work through. That comment is a hard one to swallow coming from someone so close.
Cindy

Jeff,
I am sorry that you are having such a horrible time. But I need to reiterate it is a MUST to get FMLA. Each time you go, it is going to count against you. With the FMLA you are protected. I THINK you may be able to get it to go back a little bit in time, from when you had the worst problems. Doctors fill it out, so they should know how to do it. Get your doctor to be as specific as possible. If you do this you may save your job, if not... then you know what might happen. I am not trying to scare you, it is the last thing you need right now. As we all know, stress doesnt cause the problem but it sure does exacerbate it! Get the FMLA asap!! You will feel such relief after it is done. If someone tells you not to get it, it is likely so that this is for the bosses benefit, not yours.

Please, get this done soon. Even with the little bit of this lessening your worries will help, at least in your own feelings.

Kirsty

I went back to the neuro today...he thinks the flare is mostly AS with some overlap from the MG. I was hoping he would prescribe the steroids, though, since the double vision just isn't going anywhere on its own and the flare is probably the worst I've ever had.

Unfortunately, he wants to stick to the schedule of having surgery as soon as possible. I was a little bit disappointed that I can't even walk and he wants me to have my chest opened. I really just want my condition to be managed now and then worry about whether I need that.

I ended up getting a steroid pack from my rheumy's office before going into work. I'm going to see about getting the FMLA since having autoimmune disease seems to take up so much time.

So you are taking the steroids now? If so, hope it helps quickly. Definitely get that FMLA paperwork started.

Autoimmune DOES take a lot of time...forever to get diagnosed, all the meds take weeks to work...and so on. So frustrating. I'd rather have strep or an ingrown toenail. At least those can get nearly instant relief.

Bunches of hugs on the comment from your mom. That sucks. As if you need more problems. Grrrr.

Just to let you all know...my mom did clarify her statement. She thinks that I'm having an arthritis flare...and its in my head that its affecting my muscles too. Well, at least its not all in my head anymore.

Just a quick update: The steroid doesn't seem to be doing much. Still 10/10 when I try to walk.

Unfortunately I told my boss I was being put on a steroid pack and should be better by Monday. He's upset because I told him I'd try to come in last week and then called in sick for a day and a half...I really can't predict how I'm going to feel 2 days in advance (let alone 12 hours in advance), but that is what he wants me to start doing.

I'm thinking I need to be on a full dose of steroid, at least until things start going better.

You said you'd TRY to come in and he's upset? Sorry you are having to deal with all this AND an irrational boss .

AND a seemingly unsympathetic mom, even if she clarified. Many hugs . Hope the steroid kicks in soon.

Jeff - when my joints are bad, the pain often spreads to the surrounding muscles. So that wouldn't be in your head.

Steroids work quickly but not overnight, Jeffery. How much are you taking?

Its a standard medrol pack. 4 mg pills starting with six pills and working down to one. I felt slightly better the first day, but now I'm back to where I was.

Sounds more like you need to be on the 24mg and stay there for a while. How rapidly does the dose go down?

I've never had a medrol pack. My doc would prescribe 5mg pills and 1mg pills of prednisone and we'd plan a schedule of slow reduction from that combo. It sounds as though your reduction would be 4mg at a time which sounds pretty quick.

So sorry you're feeling so ick.

sorry things are so bad. try not to worry about work, if you are sick, you are sick. take the time off if you need to. let the boss know that if he lets you take care of you, you'll be back and better able to do your job faster, then if you keep trying to work while sick. not that that will always work, but if you are sick, then you really do have to take care of you. and reading how your boss wants you to predict when you'll feel better; i had a boss a long time ago who asked me, "so, when are we going to solve this problem." when my gastritis was so bad i couldn't even think straight. you're right, they have no idea how it works, how you can't predict. but if he wants you to, maybe err on the side of caution, tell him longer than you think, then if you can go in when you said you couldn't, maybe a pleasant surprise to them? if people are getting more than they expected vs less..........

i agree, sounds like you need more than this medrol dose pack. i was on it (the 4 mg pills) in august, and its really a pretty low dose of pred.

wendy, it works like this:

Directions for Medrol Dosepak: 1st day: 2 tablets before breakfast, 1 tablet after lunch and after supper, and 2 tablets at bedtime.

2nd day: 1 tablet before breakfast. 1 tablet after lunch and after supper, and 2 tablets at bedtime.

3rd day: 1 tablet before breakfast, after lunch, after supper and at bedtime.

4th day: 1 tablet before breakfast, after lunch and at bedtime.

5th day: 1 tablet before breakfast and at bedtime.

6th day: 1 tablet before breakfast.

from what i've read, very safe, doesn't give adrenal glands time to adjust, don't have to worry about that issue coming off the pred like you do when you taking it longer. at leas that's my interpretation of why 6 days.

but they do have dose packs where the pills are more than 4 mg of pred.

and jeff, if you need to be on it longer, then maybe you should be. though you have to be careful coming off the pred then, i'm sure wendy can tell you all about that, as can others on here. just do what you have to do to feel better, ok?

jeff- yes, i'd talk the doc that this is not working well enough for you. i'd even call the answering service over the weekend, talk to the doctor on call.