Shaking, Spasms, and Misdiagnoses

Myasthenia-Gravis.com Health Leader Sally Farrier experienced several misdiagnoses before finally being diagnosed with myasthenia gravis (MG). Throughout the years, she has experienced a range of symptoms – including muscle spasms, cramping, and shaking.

We had the opportunity to hear from Sally as she talked about the impact these symptoms have had on her throughout the years and how they led to different misdiagnoses.

Cramps, spasms, and shaking

Before getting my diagnosis of seronegative myasthenia gravis and starting on Mestinon^® (pyridostigmine bromide), prednisone, and CellCept^® (mycophenolate mofetil), I did indeed have severe muscle cramps and muscle spasms. I also experienced shaking.

Many years ago the cramps, spasms, and shaking were so bad that my neurologist diagnosed me with Parkinson's disease and put me on Parkinson's medication. I ended up having a bad reaction to the treatment and was then told it was not Parkinson's.

For months, the shaking was constant, and the cramps and spasms occurred throughout my body. I was also having some trouble with my speech at the time. Eventually, most of the shaking went away, and I never got an actual diagnosis. Now, I still have a slight shake, and it makes it hard to work with my hands.

Another misdiagnosis

Several years later, I experienced cramping, spasms, and shaking again. This time it came along with breathing issues, eye drooping, and chewing and swallowing issues. I was then told I had Bell's palsy.

Any time a muscle cramped, the spasms would set it. This occurred in the small and large muscles. It would go on for hours – even days – and jump all over between muscles. If you have ever been around horses and watched them ripple their skin to get flies off their bodies, that's exactly what my body looked like – from head to toe. This would completely stop me from doing anything!

I also felt what I would describe as internal cramping. I could feel it, but it was not visible to other people. I have not heard many people talk about internal cramping and MG. For me, it feels like the same type of cramping and spasms, just internal.

My biggest triggers

I have found that heat and humidity are my 2 biggest triggers for cramping and spasms. Being overtired and certain prescription medications can also set off my symptoms, even when I'm on MG medication.

For the most part, I'm pretty aware of the situations that could worsen my symptoms. But occasionally there's still something that will lead to a few minutes of cramping or spasms. For instance, my whole family was recently gathered to help my son move. It was not particularly hot or humid. My job was to pack the kitchen items. I sat in my wheelchair and moved at my own speed.

We decided to take a break and sit outside for a few minutes in a shady area. Well, my right arm just seemed to have a mind of its own. The spasms hit hard and fast – I just about smacked one of my kids on the back of their head. I couldn't control where my arm went! My cramping has been going on for a long time, and we are all used to stuff like this happening. Luckily, we were all able to have a good laugh!