The endocrinologist finally found a solution to the low potassium issue I’ve been having, but now I’m constantly fatigued. I can sleep all day and all night. If I try to stay awake, the brain fog is much worse and I can feel myself nodding off.

I’ve been taking Spironolactone along with Potassium supplements. My Potassium level at my last blood test was 3.8. That is the highest it has been in years. I was thrilled! When the doctor saw the improvement I made, he increased the Spironolactone to 100 mgs. twice a day and stopped the Potassium.

I didn’t realize the fatigue I was feeling was related to the increase in my medications until I did a search for side effects on Spironolactone. Now I’ll have to call the doctor on Monday to see if he agrees with me and see what I can do to maintain the normal potassium level that I need. Because of the diagnosis of Myasthenia Gravis, I should be at a Potassium level of 4.0 so this is a serious health concern for me. I don’t want to spend my life sleeping though.

Have you had a problem with fatigue and Spironolactone?

Celebrity health advocates often do a good job of  spreading the news about a specific medical condition. When you see a YouTube video featuring Zak Efron and Vanessa Hudgens for Stand Up To Cancer, the cause gets noticed. Think about Jerry Lewis and what he has done for the Muscular Dystrophy Association and the conditions that the MDA covers.

Dick Van Dyke was recently named the spokesperson of the Cell Therapy Foundation which promotes stem cell therapy for diseases such as heart disease, Lou Gehrig’s disease (ALS) and cancer. Kellie Martin, who you may remember from Life Goes On,  ER or Mystery Woman is a spokesperson for the American Autoimmune Related Diseases Association (AARDA).

Celebrities bring awareness to unknown diseases. They help to raise money for research. They also inform people about symptoms, how to get diagnosed and available treatments. It can be difficult, though, to find a celebrity advocate for a medical condition that they actually have, especially if they are working. Many celebrities want to hide any kind of illness they have. It can hurt their career because they can be seen as someone who may not be able to show up when needed.

As they say, the show must go on. If a celebrity can’t work because of being sick, being hospitalized, or having a flare up, they can shut down taping of a show. There are also insurance issues to be concerned about. If a celebrity is known to have some type of medical problem, the insurance for the project they are working on (TV show, movie, CD, video) can be increased. Let’s not forget the rumor mill and the embarrassing stories that will be reported. For example, there was recently a sighting of celebrity buying incontinence supplies and it was fodder for celebrity gossip.

Abet Guidaben, former member of the Crispa Redmanizers of the Philippines Basketball Association was recently diagnosed with Myasthenia Gravis.  Guidaben was began showing symptoms of the disease when he was in Chicago last June 19 at a PBA Legends benefit game to raise money for scholarships to aid poor students in the Philippines.

His situation was so serious that he was in the Intensive Care Unit in an unnamed hospital in New Jersey. He has had difficulty speaking (dysarthria), swallowing (dysphagia), breathing and suffers from double vision. No update has been given since July 30th.

Even an athlete, who is healthy and strong can be hit with Myasthenia Gravis.

Avandia and Actos, two diabetes drugs have been shown to increase fractures in older women, according to a recent study done by William Herman, MD, of the University of Michigan in Ann Arbor, and co-authors wrote in an article published online in the Journal of Clinical Endocrinology and Metabolism. The study was funded by the CDC and the National Institute of Diabetes and Digestive and Kidney Diseases. Herman has served as a consultant for GlaxoSmithKline, which makes Avandia.

Avandia and Actos are used to treat Type 2 Diabetes and are called thiazolidinedione (TZD) drugs. Women with diabetes and over the age of 50 with fractures were 70% more likely to be taking a TZD drug than women without fractures. They were also 50% more likely to have limited mobility. This is the second study that shows similar results.

This hits home for me as my Aunt who is currently in a nursing home fractured her shoulder and now has extremely limited mobility. She is unable to care for herself and will most likely spend the rest of her life in a nursing facility.

I have Rheumatoid Arthritis and use Humira for it. Before using Humira my doctor tried the normal prescription medications until the pain lingered and I had trouble walking, typing, opening jars and the pain lingered even more. After about two months of using Humira I began to notice that the pain lessened and I my joints were a more flexible. I could walk longer, type a bit more and open jars with one of those rubber things.

Humira had a wonderful side effect too. It helped put the Ulcerative Colitis in remission. Imagine that. If I could use Humira more than once every two weeks, I’d be shooting it up a lot, a whole lot. I learned that Humira is used to treat Chrons Disease so it’s normal to have a remission to the UC.

I had a bit of a scare the last month though. Even after the Humira, I had more than normal pain from the Rheumatoid Arthritis. It was bad and in places I didn’t have it before like my knee and my left wrist. I had trouble walking, typing and opening jars again. Sometimes it was so bad that I couldn’t do any of those things. I saw my Rheumatologist after it happened a second time. We discussed that some times the Humira can stop working on your body.

We’re going to wait it out and use some other medications in the mean time. I’m thinking positively right now because Humira has worked so well for me all along. I’m thinking that it’s a flare up and my doctor agreed that it’s a possibility too.

June is almost over, but there’s still enough time to write my yearly post about Myasthenia Gravis Awareness Month. I’ve been living with MG for 7 years now. In the beginning it was so difficult that I really thought I would die. I can remember waking up at night being short of breath and thinking this would be my last moment on earth. In terror, I would hyperventilate making it worse.

That stopped thankfully and then I began to feel like my throat was closing up. At first my throat would feel numb. I don’t know how else to describe it. Then I’d feel like the opening in my throat was getting smaller. I’d be awake for hours afraid to close my eyes because I thought wouldn’t wake up.

This isn’t how the Myasthenia Gravis started. At first I felt like I couldn’t keep my right eye opened. No one could see it, but I felt it. It was annoying. Then I felt like I couldn’t move my body, like it was a dead weight. I was so tired. I remember standing in line to pick up my daughter from preschool when I was sure I would just fall right down there and sleep. I took all my might, my control to stay upright, to be able to move and talk. And then drive home.

I’d lie on the floor next to my daughter at home because I knew I’d fall asleep. At least I was close by her and would hear if something happened…I’d hope and pray.

Finally I went to the neurologist and he saw my eye drooping. It was the beginning of learning to live with this neuro-muscular disease, this chronic illness, that I take heavy duty prescription medications for, that I’ve had surgery that cracked open my breastbone, that allowed me to realize how blessed I am, how so many other people are worse off than I am and that made me the person I am today.

To learn about the symptoms of, the treatments for and the ways to cope with Myasthenia Gravis, visit the Myasthenia Gravis Association.