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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 24 minutes ago | Replies (6904)

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@californiazebra

Hi @cinderali -- It sounds like you're really suffering. My heart goes out to you.

When my son and I had genetic testing for a couple rare neuro disorders, a local neurologist ordered the tests and they were sent off to a specialty lab in another state that did the test. So the lab doesn't have to be local. In one case, the doctor had the lab contact me, they sent me a kit with a swab and I sent it back to them. Do you have a local neurologist that could order the appropriate test for neurofibromitosis or any other suspected disorder? The insurance company will likely only cover it with a doctor's prescription. If paying out of pocket, your doctor may be able to tell you which companies are reputable and will cover everything you're looking for. My son and I also had testing for cancer mutations, drug enzymes, and cardio mutations, but the testing "Color Genomics" offered did not include the neuro tests we specifically had previously. The neuro tests were pricey when we had them and only one lab in the US that performed them at that time. Ambry Genetics is the lab my oncologist used for my genetic cancer testing, but I see on their website ambrygen.com that they also test for neurodevelopmental disorders and rare diseases. Athena Diagnostics was the company for a neuro genetic test my son had 20 years ago. Looks like they are still in business. I hope this is helpful. Hoping the best for you.

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Replies to "Hi @cinderali -- It sounds like you're really suffering. My heart goes out to you. When..."

Hi, Thank you so very much. I hope you & your son are well. I have a neurologist but hes almost 2 hours from me & very booked so Im waiting to see him in July . Do you know if that test was called a full panel genome sequencing? Hope it all worked out well for you both. Thank you for giving me the info. Its greatly appreciated! Will try to contact that lab as well as discuss it with my neurologist. God Bless. Best regards.