Hi Jen, sorry I have not written back sooner. I have not been feeling well. I think you have the list down. I see an endocrinologist in a few weeks, so I hoping for it to go well. I have had to wait a long time. She is the person my dermatologist wanted me to see following my positive skin biopsy. The endo is at the medical school that I use to work with, and they are hard to get into. I have never found a good neurologist so I gave up. Dr. Diana’s husband ordered my head and neck MRI. I am waiting on those results. I see him now for my eye problems. I am already in need of bifocals. Argh….and I not even 38 yet…argh…. At least I have a good eye doc, and one that knows about EDS. Do you get bad headaches too? You could try to find a O.D. In your area that knows about EDS. They are able to treat hydrocephalus. Dr. Driscoll sent me for an upright MRI. It is better for catching the Chiari I malformation. I swear I see one on the images, but I am not a radiologist. Plus it may be wishful thinking. I am also sure I see evidence of the external hydrocephalous. Unfortunately the day I went was a day I felt decent. It was during my period, and during that time I had less symptoms of hydrocephalous. A few days latter it was back full force. I am trying to see if I have a pattern to my symptoms or if they are random. One thing I do is salt load. It is something my body craves. I notice that my mom and her sister do the same. My mom salts her fruits. Then last week my son told me that he feels dizzy sometimes and partially losses vision, just like I do.
How is your MIL? Did your husband have to leave to go be with her? How are you holding up?
Shonda