My journey

In April 2004 I found myself in an Army hospital with the diagnosis of bacterial meningitis. My husband had to be called back from Fort Hood as he was in the process of being deployed to Afghanistan. My family was told I would not make it thru the night. Well I by the Grace of God I am still here. I had to learn how to walk all over again I was told that the meningitis had exacerbated my diabetic neuropathy. So now I had to deal with the nerve pain which before was minor if any. I was placed on several pain medications and I promptly did away with most of them except for one. It would take me several years before I could manage to get off that one.

I started experiencing pain and weakness in my hands, pain in my back, and could not walk without experiencing generalized pain. Saw neurologists (yes more than one), various specialist but I felt like no one really believed me. I started falling which caused torn ligaments in my legs, torn meniscus, and finally I managed to fracture my ankle and required surgery to fix it. In between all this I also had back surgery.

I decided no more doctors and I would push through all this pain and do what I needed to do. I worked from home as a case manager so I decided I would just be thankful I didn’t have to walk anywhere. I was walking with a walker and felt I would take my time and just get stronger.

After thirteen years my job ended and I started looking for another job. My mother became very ill during this time and after many months she passed away. I was using a wheelchair because I could not walk for any length of time but I stayed at my mother’s bedside regardless of the fatigue or pain. So now I was left with my father who has severe dementia but with the help of my husband I am able to bring him home almost daily. It is because of him that I decided it is time to find out what the heck is wrong with me.

I had just changed pimary care providers and requested to see a neurologist. I personally thought I had MS. After much testing the neurologist told me I had CIDP. She told me I needed a lumbar puncture but that every other test pointed to this disease. My first response was to comment to my husband “leave it to me to get a very rare disease.”

I am still wondering how I can keep active in my father’s life. I had modified my car only to find out later that my hand was too weak to handle the controls. I haven’t started treatment because they didn’t run the protein on my lumbar puncture. I just repeated the lumbar puncture and Monday the neurologist will let me know what comes next. The neurologist is knowledgeable in this disease however he says I also have a syrinx of the spine, severe diabetic neuropathy and of course CIDP. It will make for an interesting case.

I am always in pain and fatigue easily. I am allergic/sensitive to most pain medications so I take Advil or Tylenol which does nothing for this pain.