Stumble It!Sep 15 2008
About Me
I’m in my 30s, a wife, and mother. I also have CIDP or Chronic Inflammatory Demyelinating Polyneuropathy. It took five years, many tests, and a handful of neurologists before I finally received a diagnosis and was able to start treatment.
I’ve done a lot of research and met a lot of wonderful, caring, supportive people on my journey so far. One of the things that I noticed as I searched for answers was the lack of a single place where people living with a demyelinating diseases (or the caregivers of those living with a demyelinating disease) could go to find answers and support from someone who doesn’t have a doctorate in neurology. Often times, a person will know they have a demyelinating disease long before they receive an official diagnosis of exactly which one it is. It can make it difficult and time consuming to find information, adding more stress to an already stressful time. I’m hoping to rectify that with this blog.
I may not have a medical degree (yet!) but I can read and understand medical terminology and put it in terms that everyone can understand. I’m willing to research anything I need to, especially if it will give someone else peace of mind. It’s my sincere desire to make this blog a place where the average person can find information and support from real people.
You may have a disease but it does not have you. You may be demyelinated but you are not destroyed.
I may soon be diagnosed with CIDP. The doctor mentioned it but I don’t think it is confirmed. I have be spending hundreds of hours trying to educate myself since getting answers from doctors is difficult. I awaiting another appointment/phone call with my doc to get more answers. Here are my facts:
I am a 37 year-old middle school teacher in Los Angeles. I used to be an attorney.
I have had a muscle biopsy that shows denervation.
I have had a nerve conduction study that shows severe sensory abnormalities in 6 of 7 nerves and moderate abnormalities in one sensory nerve.
My EMGs show no problems and I don’t feel weakness. I’m not a big exerciser so maybe I’m not noticing it.
I have had a ANA (autoimmune antibody) titre of over 2,000. I also have other abnormal antibody levels.
I have lots of muscle twitching, tingling, and even electrical shock/tiny twitching on the tongue at times.
The twitching and nerve sensation symptoms came on suddenly starting in July 2008.
I really appreciate your blog as your journey seems like it my be similar to mine.
Any info you might share to help me with this process toward diagnosis would be helpful. What test results support your diagnosis other than your response to steriods and IVIG? What were your first symptoms five years ago? What has your doctor said in terms of your prognosis (I know there is uncertainty).
If you have any questions for me, please ask. My doctor is Dr. Engle of the USC Neuromuscular Center.
Thanks again for sharing your story on the web.