Hi everyone,

My daughter was diagnosed 10/2013 with CIDP. She is 20 years old and is currently a music performance major. She plays a stringed instrument. The majority of her issues are in her hands. She is devastated by the diagnosis. She has loved playing since she was 10.

She has had nerve conduction test, an MRI, a CT scan, a lumbar puncture and has given over 25 vials of blood. The neurologist thought in the beginning that perhaps IVIG may help her. After all of the testing, he decided against it. He said there wasn't anything he could do, gave her a sample of Lyrica and said to come back if it got worse. We call it the "sucks to be you" diagnosis. She refuses to take the Lyrica.

I took her to a DO that is known for his unconventional ways. He initially prescribed MetanX and Deplin. She had to discontinue the MetanX due to high B6 levels in her blood (43.5). Her B12 levels are high at 1382. Iron and TIBC are good, Saturation is high at 59%. Ferritin is low at 30. She is a vegetarian and is supplementing with iron. Her storage Vitamin D is 69, she will have labs next week that will test her active D.

Recently, she was diagnosed with hypothyroidism. She is currently being treated with T4 and T3.

She has a double mutation with the MTHFR. We attempted twice to do the 23 and me testing, but her saliva does not contain enough DNA to analyze. She was only tested through blood.

I want to help her. I don't want to believe that there is nothing that can be done. I see the use of stem cell transplant. Dr. Burt's treatment includes chemotherapy. I'm scared of chemo. There is a center in Panama that does the stem cell without chemo. I'm looking into that.

I would love any suggestions or advice. I would give my last breath to help my daughter.

Thank you all so much. Knowing that there are others who share our concerns means the world to me.

Kay

Also, we are in Texas.