Comments on: About Me http://demyelinatednotdestroyed.today.com Giving help and hope to those living with demyelinating diseases and their loved ones Fri, 25 Dec 2009 05:20:47 +0000 http://www.today.com/version-2.3.1 By: Jennifer http://demyelinatednotdestroyed.today.com/about/#comment-32 Jennifer Sat, 15 Nov 2008 17:51:00 +0000 http://demyelinatednotdestroyed.today.com/about/#comment-32 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. 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.

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