Hi Gang,
Just checking on you guys. I still have no definitive diagnosis as to this day. My GP did a MRI of my brain thinking it might be MS since I am having more and more odd symtopms and that came back normal. I go to the neurologist Tuesday to try my luck again with her. This time I am going to pin her down and make her tell me something. (Yes I know; Good Luck on that one...) At least I am armed with my genetic testing results from Dr. Lehman Horn and the normal MRI from my GP. Undoubtly she will address my issues seriously now. By the way, Linda Fields said Dr. Lehman Horn wants blood samples from my sibblings. We are waiting to see what the doctor has to say Tuesday. That may be our next step.
Hope you all are doing good.
God Bless!!!
Teresa
Good to hear from you! It's encouraging that the MRI is normal. Push for testing for Isaac's Syndrome - that would be my guess.
Here's the test you would need. If you go to AthenaDiagnostics.com it's test #485, VGKC antibodies. (That stands for voltage gated potassium channel antibodies.)
I don't know if Dr. Lehmann-Horn can test for that. You might ask Linda.
I'll paste in the description below. Ignore the typical presentation symptoms - they're usually inaccurate.
Jan
VGKC Antibody Test #485
Type of Disorder: Paraneoplastic Disorders
Typical Presentation: Acute or subacute onset symptoms of limbic encephalitis including confusion/dementia, depression/anxiety and/or seizures or hallucinations
Profiles that contain this test: NeoComplete Paraneoplastic Profile with Recombx, NeoComplete Paraneoplastic Profile with Recombx (OLD), NeoEncephalitis Paraneoplastic Profile with Recombx, Neuromyotonia Evaluation
Informed Consent Required: No
Medicare ABN Required: No
Technical Information
Utility: Detection of antibodies to voltage gated potassium channels (VGKC) using RIA
Methodology: Immunoprecipitation
Patents: N/A
CPT Coding
The CPT codes provided are based on AMA guidelines and are for informational purposes only. CPT coding is the sole responsibility of the billing party. Please direct any questions regarding coding to the payer being billed.
Stacked CPT Code(s): 83519(1)
Shipping Considerations
Please label each specimen tube with two forms of patient identification. These forms of identification must also appear on the requisition form.
Preferred Specimen Requirements
Type: Serum
Minimum Volume: 2ml
Collection Tube: Red Top
Storage Conditions: Refrigerate if not shipped same day. Serum stable up to three days. Ship whole blood immediately.
Shipping Conditions: Room temperature, avoid freezing. Ship same day.
Well the doctor visit went as it usually does. I don't know why I even bother. He wasn't even concerned about my new symptoms. He even got agitated when I questiond why he wrote my prescription for 150 mg of mexiletine instead of 250 which I have been taking for a year now. He even told the nurse when I called them back after checking with the drugstore that it didn't even come in 250 mgs. If anyone knows of a good doctor in Mississippi please let me know. I'm through with this one.
Thanks,
Teresa
Hi,
Might I recommend you send a letter to Dr Stephen Cannon at UT Southwestern, Dallas.
I have had good luck at direct communication with university faculty doctors. I sent a letter to Dr. Robert Griggs and he answered with an email. I did go to some effort to keep it to a single page.
UT Southwestern is one of three centers in the US with special knowledge of rare (myotonic) neuromuscular diseases.
UT Southwestern is about 300 miles west of Jackson, MS and I20 is almost straight.