My Journey

Hello! I am new to this forum, and am glad there is one! First I would like to say that I am praying for everyone on here that you all recover and stay strong. I am 24 yrs old, and was very very active before all of this. I was an athlete-basketball and track, musician-traveling and church, went to school, had a good job, exercised daily, hung out with friends, and just overall, had a healthy, balanced, independent life. About May 2011, I had pleurisy, which is inflammed lungs. No one knows how it came about, but it felt like I was wearing 20lbs of wet clothes on my back, and I could barely walk. I was given meds and recovered. Then I caught a summer cold around Aug., but was fine in a week or so. But in Sept., I noticed alot of weird things going on in my body. For a few days, my legs would be numb and tingling, but then go back to normal. The next few days, my hands would do the same, and then my back was in so much pain, with the pain being more along my spine. Then everything was normal again. I’ll never forget. Oct. 17th 2011, I was going to go to work like normal. But I could not move or speak. I only had feeling in my left hand, and I was able to text my mom to help me. Long story short, I spent almost 2 wks in the hospital. The docs said it was possible GBS b/c of the paralysis ascending, numbness, tingling, acute breathing issues, etc. But my spinal tap, bloodwork, MRIs were normal. The EMG was ok, but they said they may have to repeat it. They gave me IVIG, and that helped quickly bring back feeling in my upper body, but from the waist-down, everything was numb. My legs felt like rubber-chicken legs. After leaving the hospital, I did outpatient rehab and IVIG treatments from home. My neurologist at first said yes, this is GBS, and treated me as so. Now it is June 18th 2012, and I feel like I’m retreating back to where I started. Back in March 2012, the neurologist said this could be CIDP or Miller Fischer. I did more blood work and MRIs, and everything’s normal still. I don’t understand how I can have the symptoms but the tests are normal. Did anyone else experience this? Now my insurance won’t allow me to continue IVIG treatments because the neurologist cannot make a sure diagnosis. Why was I approved before but not now? There was a long discussion w/the neurologist about this, and he said without the test results pointing to GBS, CIDP, or Miller Fischer, he cannot make a true dx. Should I get another neurologist? He also wants to refer me to a pain specialist and rheumatologist. Does anyone think this would help? Often times I am bed-ridden because my legs are too weak and numb to do anything. I am experiencing severe pain as I type, but I must type to see if I can find a solution. But I have severe pain in my neck, back, legs, feet, hands, wrists, and not alot of pain in my arms (weird). Bottom line is, in the hospital and out, the docs say the symptoms point to either GBS or CIDP, but the tests don’t since they are normal. Someone please help me understand all of this and offer any advice. Thanks and God bless you all 🙂