Tag Archives: pyridostigmine

Everyday is Different

Everyday is Different

Every day is different.  In fact, every hour and minute is different since contracting this diseases.  One minute I might be walking normal, and the next you’d think I was drunk.  Another minute I might be talking just fine and the next minute words don’t escape my lips.

It is difficult coming to grips with the changes.  While you want to make plans, you don’t really know what is in store.  For that matter, do any of us know what is in store one day to the next?

Of course, we don’t, but we operate on the assumption that tomorrow we will feel like we do today.  When you are told you have an incurable disease, the assumption changes that tomorrow you will feel crappy just like you do today.  So, you go from making normal plans, and now you tend to see things as planning for the worse.

Attitude

Having said that, you’re probably thinking I need to have a positive attitude.  I’m trying, but I also have to have a realistic attitude.  I’m thinking positive that by working with my doctors I will find a happy balance between medications, rest and activity.  The realistic part is I won’t get better, but I will only get better at how I manage and cope.

So, yes, if I spend 30 minutes working in the yard today and feel crappy for three days afterward, I can probably plan on that being the result of 30 minutes of yard work.  On the other hand,  if I do 15 minutes, followed by an hour nap, and feel fine the next day, I can probably say I can handle 15 minutes if I take a nap after doing the work.

Realistic

I can have a hope I might be able to do more than 30 minutes once I’m on the right dose of pyridostigmine and prednisone.  However, to be realistic, my endurance may not ever change.  What might change is how I feel between activities.

Gratitude

Gratitude is playing a big part in my positive attitude. I woke at 4 am and couldn’t go back to sleep so I went into my office, sat in my new chair (which I’ll tell you more in a bit), ate some food and piddled on my computer.  I’m grateful I did that.

The other day the delivered and set up a zero-gravity chair for me.  The doctor wrote a prescription for the chair, and I shopped around and all I could find online is stuff that cost $3500 to $9000!  These are chair specifically built for people with problems like MG, MS, ALS, etc.  I walked into Raymour and Flannigan and asked described what I needed a chair to do.  The salesman took me right to a chair that was perfect.  It was a tad over $1000.

After the set it up, I tried to use a laptop desk we have.  The wheels made it so it would not fit next to the chair.  My wife took the table legs, went to a local metal shop, they cut them off and ground the metal and didn’t charge her.  I now have it configured so I can see and use it in such a way that it rests my neck and back muscles and is less stressful on my hands and arms.

As I sat in this rig this morning, I was overcome with a sense of relaxation I have not felt since getting MG.  I was also overcome with gratitude for a Heavenly Father who has helped me work around limitations imposed by MG.  My gratitude for my wife being wise enough to take the table to the metal shop and get it modified is also near the top of the list too.

Life with Myasthenia Gravis

Life with Myasthenia Gravis

What is life like with Myasthenia Gravis?

To better answer that, I will start with the period of time when I knew something was wrong, and I will work my way forward.

Before Diagnosis

I knew something was wrong after being on antibiotics for a sepsis infection for about 2 weeks.  My infection cleared up, but I still felt like I had the flu.  Oh, I should give a timeline…

  • January 1st, 2018 – Went to Israel for 10 days.  While there I experienced tightness in my Achilles Tendon – it was very painful.  Now, I attribute that to the MG.
  • January 11th, 2018 – returned from Israel.
  • January 15th, 2018 – got the flu.  I’m really sick.
  • February 19th, 2018 – I think I’m well enough to travel to my daughter’s wedding in Utah.
  • February 23rd, 2018 – My right knee is hurting.  I erroneously associate this with arthritis because this is the knee that was hurt when I was hit by the car.\
  • March 8th, 2018 – My knee is so bad I went to see Dr. Alexander.  He said I have a sepsis infection in the knee.  Likely cause?  A compromised immune system from having had that nasty flu.
  • March 18th, 2018 – completed the antibiotics for the knee infection.  I still feel like I have the flu.
  • April 30th, 2018 – Had an episode of dizziness.  I know know that it was caused by the MG causing my left eye to just wander off.
  • May 2nd, 2018 – mowed the lawn and thought I was going to die that evening.  I’m wondering how long it takes to recover from the flu and sepsis.
  • May 21st, 2018 – I’m still getting real run-downed.  I keep thinking it takes a long time to recover from the flu.
  • May 28th, 2018 – I feel like I’m dying.  I’m afraid to go to see the doctor because I fear the news will be grim.  (Yeah, doesn’t make sense… I know.)
  • June 10th, 2018 – We go to our granddaughter’s baptism in Atlanta, GA.  While there, I still feel tired, but not like I have the last several weeks.  I’m thinking the uplift in the spirit in seeing the kids and grandkids is snapping me out of it.
  • June 18th, 2018 – Elizabethe convinces me to see the doctor.  I also schedule an appointment to see a neurologist, but it isn’t until the end of September.
  • July 1st, 2018 – I find a symptom diagnosis tool online.  I plug in all of my symptoms and ALS comes up.  Now, I’m worried.
  • July 10th, 2018 – The doctor is still testing my blood for various stuff.  Her top 3 pics:  Myasthenia Gravis (which I had to google), Parkinson’s, MS.
  • July 21st, 2018 – I completed a week-long course.  I gave the instructor a heads-up about how I’ve been feeling.  Everyone was understanding.  At the end of the week, I was exhausted.
  • July 30th, 2018 – After 28+ blood tests, I go online and start looking at various possibilities to ask the doctor about:  Myasthenia Gravis, Ataxia, CFS, ALS
  • August 22nd, 2018 – I receive a preliminary diagnosis of Myasthenia Gravis.  The neurologist prescribes pyridostigmine 3x a day.  He says if I DO have MG, I will notice a difference.  If I do not, I won’t notice a thing.
  • Augst 23rd, 2018 – I wake up noticing a HUGE difference in how I feel.

Life On Pyridostigmine

  • I went from feeling like crap most of the time, to having three good periods a day.  For about 1-2 hours after the medication would kick in, things would feel pretty well.  I still got tired, but not completely exhausted like I have been.
  • It was a rollercoaster of good and bad.
  • Symptoms that improved on this drug:  Less joint pain, fewer big muscle spasms, periods of not feeling fatigued.
  • Symptoms that did not improve:  small facial spasms (actually increased), tremors, uncontrollable limb movements
  • After a month, I asked the doctor to increase the pyridostigmine, and he said he wants me to try prednisone first.

Life on Pyridostigmine AND Prednisone

  • I feel like I have energy… until I do too much and then it backfires.
  • My activity level is about 30-60 minutes per day.  30 minutes if it is something like yard work.  60 minutes if it is something like driving to the store our out to dinner, or going to a meeting.
  • The roller-coaster effect has lessened.  When the pyridostigmine wears off, I get weak and shaky, but not so much the extreme fatigue.
  • I keep having this false sense of “I’M BETTER”.  Then, I do too much and I pay the price.
  • Recovery time is a bit quicker than before unless I really overdo it.
  • I still need to take it very easy, but my relaxation periods are more relaxing vs a feeling of “I’m dying”.
  • I get the jitters from the prednisone.
  • Insomnia is frequent because of the prednisone.
  • Certain spasms still happen.  What I was calling tremors, might actually be dystonia.  I will be discussing dystonia with the neurologist.
  • Brain fog still remains a big issue.

What I Can and Can’t Do

  • I can still bathe and groom myself.  Some MG patients can’t even brush their own teeth.
  • I can’t be on my feet for too long at a time.  Unfortunately, I don’t know what is too much until much later in the day.  So, I take things a little bit at a time.  If it works, I say, “I can do more tomorrow”.  However, if it doesn’t, I pay the price over the next few days.  This is how I came to the 30-60 minutes.
  • Mental exertion really fatigues me physically.  I know that sounds funny, but when I try to do something mentally taxing, I get fatigued.
  • Brain fog interferes with mental tasks.  Boy, don’t ask me to balance a checkbook.  Just yesterday I subtracted two three-digit numbers only to be pointed out to me that I was off by $100.  For this reason, I am shying away from big decisions that involve critical thinking. (I installed a spelling/grammar checker on my computer because it is REALLY hard to blog without making HUGE mistakes.  Just in this bullet point, it corrected at least 8 typos.)
  • I can paint, however.  I find it therapeutic.  It helps me feel like I’m doing something constructive.  Oh, I do this on my computer where I can rest.  In fact, tomorrow I take receipt of a special chair that will take the strain off my neck muscles.  There’s also no stress of a deadline or pleasing a client.  It’s just for me.
  • I can’t do anything physically demanding – lifting, repetitive actions (like using a hammer, saw, etc.), and many other tasks we see as normal day-to-day tasks.  In fact, some days I can’t even push the push-bar to open a door at a restaurant.  I have to turn my back, and walk backwards into the push bar so my weight will unlatch the door!
  • There are several physical things I used to do well, but not anymore.  They include…
    • digital dexterity (I seldom dropped stuff before this struck.  Now I do on a regular basis.  I also often have times navigating my fork or spoon when eating.)
    • digital strength
    • arm strength
    • walking without stumbling or tripping
    • talking (I now stammer when MG is making me tired.  I also get dysphonia.)
    • playing my trumpet (I don’t have the diaphragm strength now.)
    • hand to eye coordination.
    • physical labor (this is a given with MG)

What Things Might Happen in the Future?

Well, there are no definites with MG.  Every person is different.  For that matter, every minute is different.  Some of these symptoms happen without warning.  You can’t predict MG symptoms.  Ones with an * are ones I’ve already experienced to one degree or another.

  • Loss of neck support muscles*  I may have to wear a neck brace during such periods, or simply lay down until my strength comes back.
  • Going crosseyed*
  • Eyelids losing their ability to close*
  • Loss of strength in the arms*
  • Loss of strength in the legs*
  • Loss of strength in the back*
  • Paralysis of the diaphragm (this is called a myasthenia gravis crisis and requires hospitalization)
  • Loss of facial expression (can’t smile, raise your eyebrows, etc.)
  • Loss of ability to chew
  • Loss of ability to swallow and choking of food and beverages*
  • Speech loss (dysphonia)*
  • Slurred speech

So, there you have it.

If you see me walking down the street and I’m staggering and slurring my words, I’m not drunk.  I have 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.