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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 ˝ and daughter 1 ˝). 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

 

Info on HNPP

HNPP is caused by an autosomal dominant gene. HNPP is also a demyelinating form of neuropathy like CMT1A. However, the affected nerves in HNPP are described as having focal regions with "tomaculous" changes or sausage shaped figures, due to the irregular thickening of the myelin sheath.

HNPP causes episodes or periods of numbness and weakness, similar to an arm or leg going to sleep. But, instead of lasting only a few seconds, as it does in a normal person, this numbness and weakness can last from several minutes to months. These episodes may be associated with fairly mild trauma (stretching or pressure on the nerves) which would not ordinarily affect a normal person, such as: leaning on elbows, crossing legs, cutting with scissors, knitting, kneeling, sleeping in the wrong position, etc. It has usually been described as a painless disorder, although some people do have pain, which is probably a subjective sense of numbness. Most individuals with HNPP have normal strength and sensation, unless experiencing an attack.

Typically, persons who have inherited HNPP will develop symptoms in their teens or twenties, but individuals may be first symptomatic during childhood or late adulthood. Like CMT, there is a wide range in how severely people are affected. Many are so mild that they are unaware that they have a problem. Others develop the symptoms of a more generalized hereditary motor and sensory neuropathy, which on occasion may be misdiagnosed as a form of CMT. Carpal tunnel syndrome is frequently seen in patients with HNPP.

 

 
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