Demyelinated not Destroyed

I have Chronic Inflammatory Demyelinating Polyneuropathy, or CIDP. It is the chronic form of Guillian-Barre Syndrome. Similar to Multiple Sclerosis, it’s an autoimmune disease that causes demyelination of the nerves, resulting in a whole host of neurological problems. It’s also a rare disease, affecting an estimated 1-2 people in 100,000, with few treatment options.

I was diagnosed with CIDP roughly two month ago. Two weeks before my 30th birthday, in fact. I’ve been having symptoms for over five years. Tingling, muscle spasms, muscle cramps, numbness, problems with balance, and weakness among other things had all become an increasingly constant part of my life as the years went on. I went through numerous tests and a handful of neurologists in my search for an answer of what was wrong with me.

When I finally received the long sought after diagnosis, it was like someone had lifted a weight from my shoulders then promptly socked me in the stomach with it. I had an answer but I also had a disease from which there is no cure, only treatments to try to stop and heal the damage being caused. My body had decided that it was its own worst enemy. Immune systems designed for good were causing harm. Once triggered, there was no going back to “normal”. CIDP is my new normal.

Since my diagnosis, I have done countless hours of research. In my research, I have discovered there are many neurological diseases that have similar symptoms and cause demyelinating of nerve endings. While each disease has its individual charities, research, and support groups, I haven’t been able to find much in the way of a “one stop shop” for information and support. It’s my intention to create such a spot with this blog.

Even though I have CIDP, I will be posting information on other neurological diseases like Multiple Sclerosis and the like in addition to CIDP. I will be posting information on research and treatment options for demyelinating diseases in the hope that people dealing with all neurological, nerve diseases will find it useful.

This will also be a place for support. We all have our good and bad days. Even loved ones and caregivers of people with these chronic diseases will find support here.

I will post about my experiences living with CIDP from time to time. It’s my hope that by being brutally honest about the ups and downs this disease causes will help ease the anxiety of others. One of the hardest things about living with a disease like CIDP is the sheer uncertainty of it. Because of the highly personal nature of these diseases, everyone’s prognosis will be different. Still, I think being able to see what my life is like will give peace to others, especially those who are newly diagnosed.

We didn’t choose to have these diseases but we can choose how we deal with them. Even when your body is weak, you can be strong in spirit. You may be demyelinated but you are not destroyed.