Tag Archives: Myasthenia Gravis

Still Testing

Still Testing

I’m still testing my limits.  Currently, it’s about 30-60 minutes per day.  It is not a lot, but if I choose to day, say 2 hours, I’ll probably be down for the rest of that day, plus the next 3 days.

I saw the neurologist last week, and he placed me on prednisone in addition to the pyridostigmine.  He said the pyridostigmine goes after the symptoms, where the prednisone goes after the cause.

CT Scan

I also go in next week for a CT scan of my chest — specifically the thymus gland.  The idea there is to rule it out as the cause of the myasthenia gravis.  (A tumor on the thymus gland is believed to be one of the causes of MG.)

Keeping Limits

Keeping these limits are helping.  I haven’t had a really bad crash since holding to my limits.  With 30-60 minutes per day I’ve decided I must prioritize my week and choose ONE activity for any given day.  (I mean, how much can you do in 30-60 minutes?)

I did learn the other day having a dentist AND a doctor appointment on the same day not only exceeded my limit, but I paid for it also.   I was thinking… how hard can it be to sit in the dental chair and sit in the doctor’s office?  Well, evidently, too much.  I suspect it was the walking from the car to the offices and back that did it.  Oh, and I also stopped to get a couple of items at the store.  Yeah… I overdid it that day.

Next Steps

It sounds like the next steps are the CT Scan, followed by 3 more weeks on the pyridostigmine and prednisone.  I then go back to the doctor to talk about the results of the CT scan and discuss if more changes need to be made in my medication.

In discussion with other myasthenics, this process can take up to 3 years to get things dialed in.  And then, the body is constantly changing.  Some people go in to partial remission once on a steady program (and by that, I mean they feel much better, but still have to limit physical activity), while others experience a tolerance to the medications and need other changes.

Either way, it is a lifetime of learning to deal with it.

Oh, and it’s official.  I now have handicap plates on my car.

Preliminary Diagnosis

Preliminary Diagnosis

With the help from some close friends (Matt and Becca), I was able to get in to see a neurologist sooner than September 20th.  Ironically, it was with the same neurological group with which I have the 9/20 appointment.

The neurologist connected a bunch of wires and did some shock stimulus and some needle stimulus tests.  At the end, he concluded that there is a very strong likelihood that we can eliminate ALS, and perhaps even Parkinson’s.  However, he’s leaning more towards Myasthenia Gravis (MG for short).

He put me on pyridostigmine and said if it helps me feel better, then I’ve got MG.  If it does not, we’ve saved time.  He still wants me to get an MRI which is scheduled for tomorrow evening.

PROGRESS!

Tractors

They didn’t have my medication at the pharmacy so it had to be special ordered.  (There’s very small percentage of people with MG.)  So, I’m hoping it WILL help (yeah, it’s kind of funny to hope I have MG, but I’m tired of living like this — constant pain and fatigue.)  Because it will be in this afternoon, I decided to take the grandson’s to see the tractors as I promised.  I figure that should wear me out and be a good test for this medication.

We went and saw the tractors.  Ricky (the owner) was there.  He remembered me and he let me drive a big OLD Farmall Tractor and I gave Brad a ride.  It was a hoot.  Brad will always remember today, that’s for sure.

His little brother was too frightened by the noise of that big diesel engine.  It was loud and rumbly.

Ice Cream and McDonald’s

On the way home we stopped at Toomey’s Corner and bought ice cream cones.  We then stopped at McDonald’s.  The idea was to take lunch home, but the boys ate their 10 piece nuggets before we got home.

After dropping everyone off at the house, I went and picked up my prescription.  I took my first dose around 2pm.  It’s now 5pm and I’m feeling much better than I have in a long time.

Placebo effect?

Perhaps, but the doctor says if it is, I’ll at least enjoy 2-3 days not feeling crappy.  If it really is MG, I should start feeling better in 2-3 days and it will stay that way.

Posting Dereliction

Posting Dereliction

I am guilty of posting dereliction.  Well, I guess if I’ve done so willfully.  (I guess it isn’t dereliction if it is unwillfully?)

When the scripture say the spirit is willing, but the flesh is weak, I fully understand how that applies to my case.  I would willing be outside working on the yard, painting the house, and a host of other things.  I planned to paint the house this summer, but at a last minute, decide it could wait for 2019.  Anything is better than doing little to nothing.

Granted

We take so much for granted, until we don’t have it, or the threat of it being taken away comes along.  I walked a couple of blocks with Natalie and the boys to watch the bed races.  It felt so good to be outside.  That was about 2 hours ago, and I’m starting to pay the price now.

We are led to believe exercise helps us recover.  I believe that’s usually the case, but in the case of things like ALS, Myasthenia Gravis, and a few other diseases, the opposite is true.  I want so badly for the doctor to tell me they figured out what is wrong, and the best thing for me to do is to work and exercise until I drop every day.  If that would pull me out of this, I would be doing it.

In the Meantime

In the meantime I struggle with what I should write.  There have been a few days all I would be able to say is, “I laid around all day and napped and watched a couple of TV shows.”

Yeah, that may not sound very good, but when your brain and body aren’t communicating to each other the way they are supposed to, it’s the best you can do.