vdub
02-10-2011, 06:23 AM
The U of Utah Vasculitis Center is certainly top-notch, but at this point that’s about all I know. I probably won’t know anything specific about the disease for 2 or 3 weeks.
I saw two rheumatologists on Tuesday (this is Feb 2011) and had 8 tubes of blood drawn. They are leaving no stone unturned. They mentioned that I was #23 worldwide (since 1966) with this condition (Granulomatous Hypophysitis). I had to correct them and let them know that I was #24 and Jennifer was #23. What they don’t know is what caused the GH. Up to this point, the diagnosis has been that the GH was caused by Wegener’s. Now, I am less certain, but the jury is still out.
The underlying cause for the GH is the current concern. Up to this point, it was thought the cause was Wegener’s and that has been my diagnosis for about 10 months. WG is still the top contender, but there are a half-dozen other conditions that could cause it as well – all are pretty rare.
The testing that I’m going through now is as much to eliminate what I don’t have as opposed to finding out what I do have.
Yesterday, Tues, I saw an ENT. He said there was no indication of WG in my sinuses. This is neither good nor bad news, but simply more information. It doesn’t really change anything at the moment. Rather it just tends to point things on another slightly different vector and, of course, more blood tests.
Today is a down-day with no doc appts. Tomorrow, Thur, I have 5 appts starting at 0830 and ending at 1800. The last appt (1800) is an MRI and an MRA of the brain. MRI’s usually take about an hour, so it could be a long, long day. Like I said, they are leaving no stone unturned.
I am very pleased with the U of Utah Vasculitis Center and really happy that I sought out a group of specialists. Highly recommended!
I saw two rheumatologists on Tuesday (this is Feb 2011) and had 8 tubes of blood drawn. They are leaving no stone unturned. They mentioned that I was #23 worldwide (since 1966) with this condition (Granulomatous Hypophysitis). I had to correct them and let them know that I was #24 and Jennifer was #23. What they don’t know is what caused the GH. Up to this point, the diagnosis has been that the GH was caused by Wegener’s. Now, I am less certain, but the jury is still out.
The underlying cause for the GH is the current concern. Up to this point, it was thought the cause was Wegener’s and that has been my diagnosis for about 10 months. WG is still the top contender, but there are a half-dozen other conditions that could cause it as well – all are pretty rare.
The testing that I’m going through now is as much to eliminate what I don’t have as opposed to finding out what I do have.
Yesterday, Tues, I saw an ENT. He said there was no indication of WG in my sinuses. This is neither good nor bad news, but simply more information. It doesn’t really change anything at the moment. Rather it just tends to point things on another slightly different vector and, of course, more blood tests.
Today is a down-day with no doc appts. Tomorrow, Thur, I have 5 appts starting at 0830 and ending at 1800. The last appt (1800) is an MRI and an MRA of the brain. MRI’s usually take about an hour, so it could be a long, long day. Like I said, they are leaving no stone unturned.
I am very pleased with the U of Utah Vasculitis Center and really happy that I sought out a group of specialists. Highly recommended!