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

Disease(s) tested for: Voltage-Gated Potassium Channel Antibodies

Test Details

Test Code: 485

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.

Test Turnaround: 7-14 days

Type of Myotonia: Thomsen's

Country: USA

Sorry I'm just now saying hello...

How did it go with the doctor?

Hugs,
Tracy

Type of Myotonia: SCN4A

Country: USA

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

Type of Myotonia: un-known

Country: USA

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.

Type of Myotonia: SCN4A

Country: us