I’m trying not to make this a rant so I’ll just write about my symptoms without much commentary. Boring, but better than reading me whine about it at the same time, trust me.

About December 27th I had a menstrual period after not having one for about 6 months. It caused the Myasthenia Gravis symptoms to go haywire and it lasted 7 days.

Then about January 6th, this all started again. Add to that, nausea, dizziness, weakness, extreme fatigue, cramps, headaches and worsening MG symptoms. So I made a visit to my Primary Doctor as this was continuing.

I got the news that I am most likely starting Menopause. When I asked if the chronic illnesses would be made worse by Menopause I was told no. I do remember that fluctuating hormones can worsen MG. And I remember having to stop using the birth control pill when I was first diagnosed.

So I am making an appointment with my Neurologist to get things under control and to get my questions answered.

When I was first diagnosed with Myasthenia Gravis I distinctly remember being so frightened. I couldn’t tell you of exactly what my fear was based, but it was an overwhelming fear. It was as if someone had pulled a seat out from under me and I was falling into a deep, deep hole.

The fear turned into panic as my mind wrapped around all of the information that came with the knowledge of learning about the symptoms, the outlook and the treatment. When my neurologist recommended a Thymectomy as the main treatment to prevent the MG from worsening and to attempt to lessen the symptoms and the progression of symptoms, I felt trapped like a brown recluse spider trap.

I knew logically this was the best approach to take but at the same time I didn’t want to go through a major procedure that is like open heart surgery. I wanted to run away. I wanted to wake up and learn this was all a bad dream.

Making this decision wasn’t really that difficult as I first thought it would be. At that time my daughters were 16 and 5. I knew I wanted to be as healthy as possible for them as well as for me. So I chose the surgery. It was tough, but it was worth it.

When first being diagnosed with a life altering disease, don’t feel shocked that you are frightened and feeling trapped. Talk to your doctor, get help from family and friends and seek the help of a counselor if necessary, especially if you have difficult decisions to make.

I think I figured out why I’ve been having so many emotional issues recently, along with my unusual sleep patterns. I got a phone message on Friday from my primary doctor telling me that I had to call the office back because of my blood test results. By the time I got the message and called the office was closed.

Today I learned that my Potassium level is low again. It’s 3.3, which usually isn’t bad since 3.5 is the normal range. But, since I have chronic illnesses especially Myasthenia Gravis this can cause me problems.

It’s a long story about how it took so long to get my blood test results over to my Nephrologist (Kidney Dr.) but I didn’t hear anything by late afternoon. So I called that office. They didn’t call me back until after 5 PM. By then, as is usual for me, the MG symptoms were kicking in. But it was really bad today.

The nurse I spoke to told me to go to the ER because she could hear my slurred speech and shaky voice. I was so upset that I had my husband get on the phone and tell them that I know how to control my symptoms and that I was ready for my medication when they called. He went back and forth with them.

Finally they understood that I wasn’t going to the ER. It then took 3 more phone calls to tell me how to increase my medications and to go for more blood work on Monday. Sheesh! I do feel very fatigued, am having leg cramps and all over muscle cramps. The MG symptoms are also causing my muscles to twitch. But I know to rest, take my meds on time and if I feel that the symptoms are getting worse to go to the ER.

It’s funny, it’s either doctors don’t know about Myasthenia Gravis or they overreact.  Even though this ordeal was annoying, I had to laugh about it. I’m thinking positively that now that I know what’s wrong I’ll be feeling better soon.