Just one more thing

The past year or so hasn’t been high up on my list of great years. Losing our home, being diagnosed with a potentially serious heart condition, and losing both my nephew and Mama put this year near the bottom of favorites. But there is always room for,  as a television character used to say, just one more thing.

one-more-thing

Early this month I saw my doctor for a “routine” follow-up after the hospital stays this summer. I’d seen her in August but she wanted to see me every few months for a while to monitor everything.

While I was there she noticed that my eyelids, particularly the right one, droop. I’d mentioned that my arms and legs were feeling really weak and tired. I also had complained that I’d been choking a lot for no real reason. I’ve been eating and drinking my entire life and had rarely had such issues. She asked a few questions then told me she wanted to have my blood sent to the Mayo Clinic. “It’s the only place that can run the test I want.”

Sending my blood to the Mayo Clinic struck me as being very unusual. When I looked puzzled my doctor told me she was pretty certain I have Myasthenia Gravis. I cheerfully let the lab vampires get some samples for that test and a few others the doc wanted. I was quite confident that I did not have Myasthenia Gravis…whatever that was. The extra test was, in my mind, just one more thing. And I didn’t even have to do anything but let them take an extra tube of blood.

About a week later I got a notice that test results were available on my patient portal. I checked the “normal” tests I routinely have done then looked at the one from the Mayo Clinic. It was positive for the antibodies for MG. I still thought this probably didn’t mean much. Perhaps it was likely to have these antibodies without having the disease. But…no. In fact, only 85% of the people with MG have the antibodies and it can take a very long time for them to show up in the blood.

While I was waiting for the results I did look up Myasthenia Gravis. It’s under the broad umbrella of The Muscular Dystrophy Association diseases. It’s a neuromuscular disorder that causes muscle weakness/fatigue, drooping eyelid(s), trouble swallowing, chewing, speaking, and even holding up one’s head. Not everyone has every symptom and the condition can even go into remission. Although incurable it is treatable.

slideshare net

This is a very brief description of Myasthenia Gravis from Slideshare.net

I’ve already had the Pulmonary Function Test and I have an appointment with an excellent neurologist in less than three weeks. Coincidentally the same week I see the cardiologist for the newly diagnosed heart problem. I’d tried to get them on the same day because we have to drive all the way to the University of Michigan hospital for both but there was zero joy on arranging that.

The reason I shared this information is because I may not be blogging every day. As you can see from the past few days, I didn’t write at all. It’s just one more thing but it’s kind of dragging me down for right now. I really want to write and to read your blogs but it may be a little difficult for me until I start the treatments.

If you want to learn more about Myasthenia Gravis I pasted some information below from the Mayo Clinic website.

Symptoms

Eye muscles

In more than half the people who develop myasthenia gravis, their first signs and symptoms involve eye problems, such as:

  • Drooping of one or both eyelids (ptosis).
  • Double vision (diplopia), which may be horizontal or vertical, and improves or resolves when one eye is closed.

Face and throat muscles

In about 15 percent of people with myasthenia gravis, the first symptoms involve face and throat muscles, which can cause:

  • Altered speaking. Your speech may sound very soft or nasal, depending upon which muscles have been affected.
  • Difficulty swallowing. You may choke very easily, which makes it difficult to eat, drink or take pills. In some cases, liquids you’re trying to swallow may come out your nose.
  • Problems chewing. The muscles used for chewing may wear out halfway through a meal, particularly if you’ve been eating something hard to chew, such as steak.
  • Limited facial expressions. Your family members may comment that you’ve “lost your smile” if the muscles that control your facial expressions have been affected.

Neck and limb muscles

Myasthenia gravis can cause weakness in your neck, arms and legs, but this usually happens along with muscle weakness in other parts of your body, such as your eyes, face or throat.

The disorder usually affects arms more often than legs. However, if it affects your legs, you may waddle when you walk. If your neck is weak, it may be hard to hold up your head.

Diagnosis

Neurological examination

Your doctor may check your neurological health by testing your:

  • Reflexes
  • Muscle strength
  • Muscle tone
  • Senses of touch and sight
  • Coordination
  • Balance

The key sign that points to the possibility of myasthenia gravis is muscle weakness that improves with rest. Tests to help confirm the diagnosis may include:

Edrophonium test

Injection of the chemical edrophonium chloride (Tensilon) may result in a sudden, although temporary, improvement in your muscle strength. This is an indication that you may have myasthenia gravis.

Edrophonium chloride blocks an enzyme that breaks down acetylcholine, the chemical that transmits signals from your nerve endings to your muscle receptor sites.

Ice pack test

If you have a droopy eyelid, your doctor may conduct an ice pack test. In this test, a doctor places a bag filled with ice on your eyelid. After two minutes, your doctor removes the bag and analyzes your droopy eyelid for signs of improvement. Doctors may conduct this test instead of the edrophonium test.

Blood analysis

A blood test may reveal the presence of abnormal antibodies that disrupt the receptor sites where nerve impulses signal your muscles to move.

Repetitive nerve stimulation

In this nerve conduction study, doctors attach electrodes to your skin over the muscles to be tested. Doctors send small pulses of electricity through the electrodes to measure the nerve’s ability to send a signal to your muscle.

To diagnose myasthenia gravis, doctors will test the nerve many times to see if its ability to send signals worsens with fatigue.

Single-fiber electromyography (EMG)

Electromyography (EMG) measures the electrical activity traveling between your brain and your muscle. It involves inserting a fine wire electrode through your skin and into a muscle to test a single muscle fiber.

Imaging scans

Your doctor may order a CT scan or an MRI to check if there’s a tumor or other abnormality in your thymus.

Pulmonary function tests

Your doctor may perform pulmonary function tests to evaluate whether your condition is affecting your breathing.

 

Author: Elizabeth

I'm a wife, mom, and grandma (known as Bam) who loves cooking, baking, gardening, and all things that go into making a cozy coop for my brood. I have a disability so you may pick up tips on how to do things when some things just don't work right!

18 thoughts on “Just one more thing”

  1. Oh my, you’ve been through a lot. I understand about not blogging as often. Put your health first! Also sorry that you also lost your nephew. 💕

    I’ll be praying for you and I’ll see you when you are able to post again. 😊

    P.S. I got the Columbo reference. 😂

    Liked by 1 person

      1. 😁 Sadly I’ve only seen the TV movie specials, not any of the series yet. My dad said the TV series that wasn’t movies were better.

        Oh my, parents and brothers??? My heart breaks for them too. 💔

        Liked by 1 person

      2. We watched both the series and the movies. It’s been a while but I think your dad is right!
        Yes, the guys have been through it in the last few years. I’m praying everything goes well for them for a very long time!

        Liked by 1 person

    1. Thank you. I believe I’ll do just fine. We were discussing it and I think I’ve had MG since my twenties but I never bothered to tell my doctor back then. But reading the symptoms and thinking back we were saying, “Oh, my gosh! That was THAT!”

      Liked by 1 person

      1. Yes. As I was reading the symptoms after my doctor told me she was sure I had it I kept thinking, “Well, that’s nothing new. I’ve had that for decades.” Finally it hit me. LOL I’m not the sharpest knife in the drawer.

        Like

    1. I’m actually strangely pleased. This answers so many questions and, since it’s treatable, I think I’ll be just fine. We more or less realized I’ve had it since I was in my 20’s but never thought to discuss the symptoms with a doctor. Young and dumb. But if it has been MG all these years then I’ve already got it knocked! And with treatment I’ll really do well. It may take a little adjusting on the basement living situation but, thanks to my mother-in-law, we’ll be able to make changes in case I end up back in a wheelchair for a while.

      Liked by 1 person

    1. Thank you, Camie. If you have to get a muscular dystrophy this is the one you “want.” I could end up back in a wheelchair for a while but it can also go into remission for years and years. I look at is as motivation to get the basement bathroom done immediately and do as much as I can down here as quickly as I can.

      Like

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