Appt today

[acaverly]

I had a appt today with Nuero Opthamologist. Recent blood work showed high on ck and pth intact. It is not high enough to diagnose with anything. They sent for approval to insurance with cpeo gene testing. It was turned down and now appeal was sent. they have sent tests and blood work to other doctors including Mayo clinic. He is looking at the CPEO which is a mitochondrial disease, so waiting for approval for the test. I asked about vitamin d and he is not concerned. He said I could double my dose. MS is ruled out at this time.

[22cyclist]

If your PTH is high you might have them to consider a parathyroid tumor. Hyperparathyroidism is a mimicker of MS. The tumor itself is almost always benign and you are cured upon removal. A simple 24 hour urine collection test can diagnose it. You may want to ask your docs about it. Your calcium is usually high, but may only be high in the 24 hour urine test.

If not, I wish you luck getting your insurance to fund your other test. Mine refused about everything.

Whatever happens, I hope you get a treatment and some relief soon.

Take care
Lisa
Moderation Team

[acaverly]

He said it is not high enough, but seems high to me. Calcium has been high for a year. My blood test levels indicate CPEO at least that is what doctor said.

[acaverly]

Here are results from LP. I foundmytest results online. eName Result
Normal
Range
PROTEIN,
CSF
43 mg/dL 15-60
CSF
Electro
Interp
Oligoclonal banding in CSF also present in serum. Not considered supportive of a diagnosis of
multiple sclerosis. 20 band(s) identified in the CSF. 20 band(s) identified in the serum.
Reviewed by: David N. Alter, M.D. 01/18/13 16:25 EST

[22cyclist]

You need to get a second opinion, preferably from an endocrinologist. They take care of this. Your calcium should NEVER be high, and with a high PTH, whatever the level, it indicates hyperparathyroidism. I went through this with my husband and he is a surgeon, but it was still a struggle to get them to treat it. CPEO is still a symptom. My hubby had INO which is similar. Just think about getting it checked out by another doc,

Good luck
Lisa
Moderation Team