Diagnosis Pots, Nmh And Now Paf

[valiz]

I was diagnosed in 2009 with POTS and NMH at Johns Hopkins. At the time I did not understand my diagnosis and opted not to be followed there. Instead I have been followed by the referring Nephrologist/Internal Medicine MD in my home town. He now feels that I have progressed to PAF but I have had no additional tests done for PAF, he is just going by my symptoms. After my last app in Dec I received a card in the mail to see a neurologist that is in the same practice. I figured my Dr. had decided that after I was seen. So the appt was this past Tue. Come to find out, I was not referred to see him by my Dr.and I had not made the appt by myself, so it was a bit awkward but he could access my records. So he did a minor exam and wanted a cervical MRI even though I just had one 3 years ago. He said because of my brisk reflexes in my knees. I said only and upright MRI will show chiari and he said a regular one will if it is severe enough. He also is sending me for a consult for a sleep study. I am fine with sleep study as that is one of my big issues.

So my question is do any of the rest of you have neuropathy and have brisk reflexes? Do you feel there is any point in doing another cervical MRI so soon? The other showed degenerative disc disease at almost every level.

Liz

[gjensen]

I have very brisk reflexes and they wanted to check my spine to. I do have small fiber neuropathy.

I have degenerative discs etc., but does not seam to be at the root of any of my problems. They do not seam bad enough.

[Katybug]

I have hyper reflexes in my arms which my geneticist and pots neuro are attributing to several structural issues in my cervical spine. My upright mri changed significantly from Dec 2012 to another that was done November 2013. It went from showing that I had instability in the area but not one place that was of particular concern to a disc that is not conpressing my spinal cord and the 2 surrounding vertebrae being misaligned by 3 mm and worsening with flexion.