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Old 06-14-2010, 06:42 PM #1
kpRN kpRN is offline
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Join Date: Jan 2010
Location: Van Wert, OH
Posts: 105
10 yr Member
kpRN kpRN is offline
Member
 
Join Date: Jan 2010
Location: Van Wert, OH
Posts: 105
10 yr Member
Default Just returned from Cleveland Clinic

Wow. What a long day. Left home at 0830 this morning and just now getting home 11 hrs later. I left Cleveland Clinic feeling inspired and hopeful for the first time in a long time!! I saw Dr. Steven Shook who is a neurologist that specializes in PN and also in neuromuscular disorders. He spent 75 mins with my husband and myself going over timelines, symptoms, testing done at other facilities and a physical exam. Let's just say he was less than impressed with the $15k + workup I had done through IU. While my neurologist at IU felt it was unimportant to do skin biopsies (because the treatment is the same regardless, according to him) Dr. Shook has ordered skin biopsies, a repeat EMG and the following blood work.....copper level, methylmalonic acid, vitamin B12, paraneoplastic AUTOABS, sed rate and monoclonal Proteins, as well as a 2 hr GTT (as he feels HgbA1c's are not good predictors of diabetes.) He has also taken my neurontin from 900mg at bedtime to 600mg three times a day (titrating up, not increasing all at once). He is also testing to rule out CIDP. He does feel that there is an additional component of fibromyalgia coming into play here and possibly causing some of my on-going discomfort. Hubby was even impressed with him.....that is pretty good because hubby is getting increasingly frustrated with the whole medical system as he watches my health decline. I will let everyone know what I find out. Lab work was done today ( except for the glucose TT) and EMG & skin biopsies are scheduled for 7/27. In the meantime, I fly out to California for a week tomorrow morning to visit my brother. Things are maybe looking up???? I will check in with you soon and share results........God bless.
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