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Doctor referral

kld05
0 Recommendations

We found a specialist in Ann Arbor, Michigan thanks to help through this website, but now the doctors my goddaughter is going to refuse to refer her saying they have to run more tests. She is in stage 2 liver failure and they have admitted they have never treated this disease and no virtually nothing about it. They are always bringing a string of interns in when they treat her. She is their "ginny pig". We don't know what to do. We have contacted Michigan ourselves, but got no response. I'm very scared for her. They are piling the chemo on her.

Explore topics in this discussion:

Wilson disease Burns

7 replies

-Melissa-

Why would they be giving your goddaughter chemo to treat Wilson's Disease? I would run away from them fast! I don't think you'd need a referral to go to Michigan. If your doctor won't give you one though, I'd contact your insurance company about the situation and take it upon yourself to get to Michigan.

Has she been diagnosed with Wilson's disease yet? What are the tests that they're running to diagnose or rule it out?

Best of luck,

Melissa

kld05

Yes, she has been diagnosed for some time now and had been doing pretty good, but then took a turn for the worse and that's when they started the chemo. She has been seen by three different Drs. One was a homeopathic and the other a primary and now a nerve/muscle dr. I am in Mississippi and she is in Kentucky. Her husband lost his job and so they have given up internet and I'm trying to get info. Her hands and feet look like they have 3rd degree burns on them. And she already has kidney and liver damage. Last tests showed stage 2 liver failure.

christina_755

Please email Dr. Askari at Ann Arbor, MI WIlsons Clinic

faskari@med.umich.edu

THe University of Michigan has the WIlsons Disease Research Clinic. Please reply if you need any more help

Their number is 18003956431

kld05

Thank you so much. We got in touch with this clinic and she has an appt in October. We are getting all her records together and they told her she did not need a referral. She will have to have a liver biopsy. I thank you all so much. Now I feel as if we are getting somewhere. Thanks again so much.

-Melissa-

Glad to hear that you got an appointment. Did you get her off of the chemo? I hope so! Has she had a liver biopsy before?

kld05

No, she has never had a liver biopsy before. And yes, they are taking her off of the chemo. Thank goodness!

moontester

Please keep us posted on her progress. We will be praying for her.

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