DATE:                 September 7, 2007

SUBJECT:         CIDP

Dear CIDP USA

June of 2006 I received IVIG’s for five days at a local doctor’s office. At the time I was diagnosed with HNPP. I am a 24 year old mother of two (my son 4 ½ and daughter 1 ½). My symptoms of atrophy started in my calves and tingling in my feet in November of 2005. It was in the last trimester of my pregnancy with my daughter. She was born on February 22, 2006. By my six week check up I’d fallen so many times I knew something was wrong. My OBGYN referred me to a sports injury doctor. He ordered an EMG and MRI of my spine. The EMG was so abnormal to doctor actually called a neurologist from the other room to come and look. The neurologist continued with the EMG and told me I had HNPP. I was referred to the same neurologist. He wouldn’t see me for an initial visit until I was in physical  therapy for six weeks since he already saw me during the EMG. When I was properly diagnosed in August of 2006 I was hospitalized for two weeks while I received plasmaforesis.  I also started 70mg. of predisone everyday. This was successful and I gained some strength back, but now a year later I am still unable to walk with out my AFO’s.  My neurologist moved away and my follow up appointment (with the nurse practioner and another doctor in the team of neurologist at Emory in Atlanta,GA) last August wasn’t what I thought it should be to say the least. Between the rudeness and lack of knowledge of my specific condition I felt my eight hour drive was a waste of time. I was in tears by the end of the visit. September of 2006 I finally was approved for disability and am currently furthering my education at the local tech school. I have faith that God will give me the strength I need for what comes my way. Bringing awareness and a voice to all the others suffering in silence is something that’s been weighing heavy on my heart. I know the lest I can do is tell my story. Please contact me so I’ll know someone read this and feel free to post my story anywhere. If you would like more or less detail I can edit my letter so others can know they’re not alone and there is hope no matter the circumstances.  I would like to pursue my IVIG or plasmaforesis treatment with another neurologist that is more aggressive in fighting this disease. I expressed my concern of continued weakness a couple of weeks ago and was looked over as if I shouldn’t worry. How can I not worry when I am struggling to do my day to day activities and take care of my family as well as my self. My goal is walk without AFO’s and run with my children. Please inform me of any neurologist you recommend in GA or surrounding states. I would like to stay as local as possible.

 

Sincerely

www.cidpusa.org  www.cidpusa.org/P/ivig.htm  http://www.cidpusa.org/disease.html http://www.cidpusa.org/Lahore.html 

 

 

 

Laura Starnes