Frazzled wires

My right hand has been slowly weakening over the last two years but this morning, when I grabbed my squeeze ball, my grip was surprisingly firm. One of the rare times when you get a glimpse that the strength is still there somewhere. I remember some of these moments when my legs were getting weaker. It felt good. The moment passes, the weakness returns, and it's a good reminder that MS is a neurological disease with a mind of its own.

How do you explain MS?

Sclerosis is defined as abnormal hardening of body tissue or plaques often caused by inflammation. Hence the term multiple sclerosis.

Think of the electrical system in your car. Now imagine a rat has been gnawing on the wires. With MS, the body's immune system attacks the coating on the nerve fibers called the myelin sheath. This can occur as a sudden attack, called a relapse, or by slow progression. Lesions or scars form in the brain and sometimes on the spinal cord. Just like a signal moving through a wire, the signals are often distorted and affect the performance of the body. A variety of symptoms appear depending on the location of the scars. After a relapse, some of the symptoms can improve or disappear altogether. Some of the symptoms may be permanent and the more relapses the more likely you are to have permanent damage. Slow progression can occur with or without relapses. The damage is generally permanent and continues to worsen.

Some common symptoms include:

Sensitivity to heat

Numbness

Tingling.

Spasticity

Trouble with walking

Weakness

Vision problems

Dizziness

Bowel and bladder function.

Fatigue

Cognitive problems

Pain

The problem with MS is that the nerve damage can't be reversed. Researchers are starting to identify possible treatments that could potentially rebuild the myelin covering, but we're not there yet.

There are currently over 20 MS medications that do a relatively good job of reducing the number of relapses which helps delay the progression of symptoms. The focus of recent research has been on progressive forms of MS. Several medications are in trial and hopefully will receive approval soon.

Unfortunately, for me when symptoms first presented in 2005, I did not receive a diagnosis and I did not start medication. My symptoms remained steady for 9 1/2 years and I did not have any relapses. In 2015 when I started having trouble walking and finally got a diagnosis of MS, I started medication. My MRIs remained stable, but my progression continued. The medication wasn't working and the damage was permanent so two years ago I stopped taking them.

If you ever have questions, just ask me. Everybody's experience with MS is different. I'm learning to appreciate the research. Maybe someday we can repair those frazzled wires.