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June is Myasthenia Gravis Awareness Month-yes, I’m late!

June is Myasthenia Gravis Awareness Month-yes, I’m late!

I’ve been a little backwards lately…a lot going on in the Lane.  I wanted to talk about MG and APS as both have awareness months in June.  Even though I kind of missed the boat on talking about them earlier it’s ok, as long as word gets out, it’s ok if it’s late.  Right??  I’m trying to make myself feel better for not doing this sooner 🙂

Myasthenia Gravis means “grave muscle weakness”.  The most common form of MG is an AI(autoimmune) neuromuscular disorder. So many of us AI’s go and see a rheumatologist but with Myasthenia Gravis you would see a neurologist.  I learned a lot from reading at the Myasthenia Gravis Foundation of America and now I’m going to try and squeeze some of it out of my brain into a mini biology lesson.  Bear with me as I’m running on no sleep.  Like my disclaimer?

When our brain sends out a signal for our muscles to move, an impulse travels down the nerves to the muscles. But the nerve and muscle don’t actually touch; there is a space between the nerve ending and the muscle.  It’s called the neuromuscular junction.  Alrighty, here is the place that I’m going to have to jump back and forth and plagiarize the site because my pea brain can’t remember it all.

According to MGFA when the nerve impulse originating in the brain arrives at the neuromuscular junction it releases a chemical called acetylcholine.  Acetylcholine travels across the junction to the muscle side and attaches to many receptor sites.  The muscle contracts when enough of the receptor sites have been activated by the acetylcholine.  In MG, there is as much as 80% reduction in receptor sites.  The reduction in sites is caused by an antibody that destroys or blocks the receptor sites.

This next part I know a little bit about so I don’t have to cheat 🙂 The antibody is a protein that is supposed to destroy foreign proteins called antigens, like bacteria and viruses. The immune system in a person that has MG makes antibodies that attack their receptor sites.  This causes a slow down in acetylcholine being able to start up enough receptor sites for the muscles to do what they are supposed to.  The end result is muscle weakness.

Myasthenia Gravis. It’s a mouthful. And a body full.  I have a friend who has this treacherous disease and it sucks to put it bluntly.  MG targets muscles and leads to muscle weakness.  Breathing, swallowing, walking; it affects voluntary muscle groups.  Before I even knew what MG was I had seen a video on You Tube of a woman who was getting harassed by the police while on the ground.  She kept saying ‘Myasthenia Gravis’ as they taunted her as a troublemaker because of ongoing issues with her neighbor.  When the EMT’s came they told her they never heard of it as a dismissal.  As if someone has never heard of something then it must not exist, ha!  I believe there are close to 100 autoimmune diseases and just because I have one doesn’t mean I know them all.  Just because you are medical personnel doesn’t mean you know every disease and condition known to man.  Ugh, watching it made me sick to my stomach.

We all know that research and funding are some of the ways to getting closer to finding a cure for autoimmune diseases.  Awareness is also very important.  We have to get the word out about all of these diseases, let everyone know just how important it is to spread the word.  Make ‘autoimmunity’ a household word. The more we know as a public, the more people will be pushing for funding to find a cure.

Thanks for listening.  I planned on writing a little about MG during it’s actual awareness month, but June was a completely chaotic and sad month for us. Stop by Myasthenia Gravis Foundation of America and check it out.  It’s a really great place for information, advocacy, and patient education. Next up, APS!

Until next time,

And they go unanswered, for now…

And they go unanswered, for now…

I had a feeling that this would happen.  I’ve experienced it far too many times these past couple of years.  When a doc doesn’t know what to do, they throw in the towel.  My husband called the rheumy’s office for the blood test results and was told by the nurse that the lab missed running the sed rate but all the other numbers looked OK.  So my doc didn’t think it was autoimmune related.  That’s it. period.  I feel very abandoned, I don’t know where to turn now.  They didn’t even want to run the sed rate again, I felt very much like he thinks I’m being a whiner, or worse than that a malingerer.  I don’t know what’s happening to my body, and before getting sick I didn’t have any problems so of course I think it’s autoimmune related.  Suffice it to say, yesterday I had the blues big time.

I find out today the lab results from the neuro’s office.  sigh.  Maybe he can help me, I just don’t know.  I’m still waiting for the referral to go through for the punch biopsy he wanted to have done at the hospital up north…maybe my muscles are related to the small fiber neuropathy.

When I started this blog, I wanted it to be a forum for other people who were going though some of the same issues I am and to share some knowledge that I’ve acquired.  I need to focus on that for now, I certainly didn’t want this site to be a TOTAL whinefest from me, I’m just really scared right now.  I can’t control my muscles, and not only is it painful, it is very scary.

I need to start thinking positively and try and figure out my next step in this.  We learned very early on that we have to be our own champions, I need to figure out where to turn for help now.

If anyone has had any similar episodes with their muscles, I would love to hear from you!

Now, I am going to focus on flipping this back into the blog that I wanted it to be 🙂  I’d like to do a review on one site a week of the places that I’ve found to be very helpful, supportive, and informative.  So that’s my mission for today!!  Positivity and some research.

Until next time…

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