NikkiNicole
08-01-2013, 12:55 PM
I never thought I'd be so happy to hear such words from a doctor. Who really wants to celebrate a diagnosis of a life threatening, incurable disease?
Well, when it's been almost two years of not feeling good, wondering why, and doctors saying yes/no/yes/no/maybe/I don't know ... it's good to finally have it cemented in stone!
Yes, I have once again finally, officially, been diagnosed.
How did all this happen?
Well, I demanded a second opinion, got referred to a different rheumatologist in San Rafael who happens to be closely acquainted with Dr. Chang at UCSF and ... she went over my chart, asked 100 questions more than anyone else, called and spoke with several pathologists about my biopsies, spoke with my doctors, her colleagues, UCSF and the VA and says "Yes, I definitely think you have Wegener's and we need to start treating this"
So, I'll have an appointment to go over my new medication regime, and I'll have a rheumy and a vasculitis specialist working on my case.
It was weird how I mentioned wanting to see Dr. Chang at UCSF and the doc saying they were friends and that she always brought cases to Dr. Chang on consult for vasculitis. It was like fate.
So ... yes, I am mildly celebrating a grim diagnosis because I actually have one. :w00t:
I even looked at my chart, it's back on there as my conditions, it's there in case I can't speak it myself. It's all finally done. Thank goodness I now can focus on getting to feeling better.
I don't know what meds I'll be on, I hope to speak with her tomorrow. I'll deal with any side effects (except weight gain, please no more weight gain!) just to hopefully start to feel normal again.
Sorry I've been MIA. I've been reading everyone but just haven't felt like whining to you all. But now, I don't have to! I know what's going on with me!!!
Well, when it's been almost two years of not feeling good, wondering why, and doctors saying yes/no/yes/no/maybe/I don't know ... it's good to finally have it cemented in stone!
Yes, I have once again finally, officially, been diagnosed.
How did all this happen?
Well, I demanded a second opinion, got referred to a different rheumatologist in San Rafael who happens to be closely acquainted with Dr. Chang at UCSF and ... she went over my chart, asked 100 questions more than anyone else, called and spoke with several pathologists about my biopsies, spoke with my doctors, her colleagues, UCSF and the VA and says "Yes, I definitely think you have Wegener's and we need to start treating this"
So, I'll have an appointment to go over my new medication regime, and I'll have a rheumy and a vasculitis specialist working on my case.
It was weird how I mentioned wanting to see Dr. Chang at UCSF and the doc saying they were friends and that she always brought cases to Dr. Chang on consult for vasculitis. It was like fate.
So ... yes, I am mildly celebrating a grim diagnosis because I actually have one. :w00t:
I even looked at my chart, it's back on there as my conditions, it's there in case I can't speak it myself. It's all finally done. Thank goodness I now can focus on getting to feeling better.
I don't know what meds I'll be on, I hope to speak with her tomorrow. I'll deal with any side effects (except weight gain, please no more weight gain!) just to hopefully start to feel normal again.
Sorry I've been MIA. I've been reading everyone but just haven't felt like whining to you all. But now, I don't have to! I know what's going on with me!!!