From JJM Jeff

September 2, 2009 at 9:43 am

in 1994 I was diagnosed with severe spinal stenosis which required laminectomy back surgery. Several weeks to a few months after, I started developing CIDP symptoms, which neither I or any of my Dr.’s knew or thought about. It took 4 full months for me to recover enough to get back to work. A few years later my CSF was just slightly elevated & a full EMG at a University Hospital that showed chronic, progressive damage occurring in my legs was attributed to nerves cut during surgery. One of the top doctors at their MS Clinic actually said, Go out & live your life & come back & see me when you can no longer walk. I left with a perscription for 25 mg of Amitriptyline. In the 15 years it took to get my diagnosis I went through 3 GP’s, 2 Carpel Tunnel Surgeries, a rhumatologist, and a second back surgery in 2007. Finally & unfortunately I started falling down at work due to loss of balance (May 2008). By this time I had stopped driving. I called my wife & told her to pick me up & take me to the ER at our hospital. A 3 week stay there & 2 months of outpatient PT & I was still no better. Ultimately I was sent to another, (different), university hospital and finally EMG’d properly which led to the CIDP dx. Without meaning to sound cliche, it was a long hard road and not anywhere near what others have told about on this post. What I found most disturbing about this disease, is that you must be your own self advocate. It is easy and aggravating to see when a doctor is patronizing you. Holding your hand and giving you their “bedside” manner when they have convinced themselves that their is nothing that THEY can find medically wrong with you. It is most important to be persistent when communicating with doctors & adamant when you know they are not “hearing you”. I had to INSIST on further medical treatment for finding the proper dx. They wanted to send me back to work with “accommodations” & follow up a year later? Huh ? I could not drive or walk due to the severe sensory symptoms. I thought I’d never tell the above on this forum because I did not want to come off sounding like a complainer. So many other folks have had such a harder time & I have found a Great Respect for all of you! Ultimately, I’m glad I got it off my chest.
JJM Jeff