Another viewpoint

January 12, 2011 at 12:03 pm

Melissa, I have CIDP and it’s not fun. My condition was suspected by a neurosurgeon who examined me for a totally different problem. I was going numb and/or paralyzed from my waist down in both legs – so much so I could stick my legs with a pin and did not feel it. I told my PCP about it 7 years ago and he blew it off as nothing. I am not a doctor so I clouded the issue by self diagnosing my problem because no doctor would listen. Finally, after almost falling down like a common drunk while walking to a Broadway show in NYC I had enough. I went to my cardiologist and told him about my 7 year condition. I told him I thought I had PAD (peripheral artery disease). He had extensive testing done and we ruled that out. He suggested it could be neurological and sent me to a neurosurgeon and he suspected I had several things going on and he sent me to a neurologist. Simultaneously, the cardiologist also sent me to a rheumatologist. Simply put, enough is enough and I was not going to take NO for an answer. I wanted to know what I had. The doctors realized I was very serious about this when I started using and questioning them in their own language. After all the test (things like lumbar melograms – which I enjoyed so much I passed out !). We all finally came to a conclusion. I had spinal stenosis, including lumbar stenosis which causes bi-lateral pinching on my sciatica nerves which caused the numbness and paralyses. Stenosis alone can put one down. However, the neurologist did a EMG on me which proved I had CIDP too. A second opinion with a different neurologist confirmed I have CIDP. I then changed PCP’s and found a wonderful one with the help of my cardiologist. I thought why do I want to go to a doctor who won’t listen, especially after being diagnosed with a serious disease. The point of this diatribe is you too have to say enough is enough. You are responsible for your own health. DO NOT LET THE DOCTOR BE YOUR DADDY – YOU TAKE CHARGE AND DON’T TAKE NO FOR AN ANSWER. Melissa, if you tell us where you live I’m sure some other posters could give you names of “GOOD” doctors in your area. You need a second opinion and you need it fast. Just because you had GBS before doesn’t mean you have it now. You may have some other disease which manifests itself as GBS and it may be a totally different disease. Good Luck and keep us posted on your progress.