I was not comfortable with the suggestion of multiple organ biopsies as suggested by Hopkins 3 weeks ago already. . None of my drs at home wan2to or see a point in the procedures, it definitely makes me feel good were on the same page:) I’ve been very fortunate throughout my treatment that all my drs have been in agreement with diagnosis and treatment so that’s made this hard time easier for my family and I. . The recommendation from Hopkins was a course of action I really didn’t like of feel comfortable with and you know something, its totally ok to respectfully disagree with a specialist! I totally get the point, they feel I “might have a more systemic disease” and specific diagnosis might come of it but I think the risk is greater than the reward. .like my good friend/primary dr said , we do a lung biopsy to find what, pulmonary fibrosis??there’s no cure only treatment and the cytoin is helping my lung disease symptoms sooooo screw the biopsy!love her! All my Dr’s and I agreed though if things start changing, organs start failing we’ll have to take a more invasive route but hopefully I won’t get there for a while. . I see my rheumatologist on Tuesday so I’ll let you all know what’s in store for me next:)xoxo
Nice to hear that your doctors are respecting you and choosing less evasive treatment.
I am happy for you and your decision. It’s great that the doctors are standing behind you too! I see savage on Wednesday. I’m sure she will be on the same page with you. Hope your feeling better soon.
Still waiting to have lunch when u are ready.
Thank friends:)dewing3569 I sent you a message , hopefully you got it??I’ve had some trouble posting from my phone and tablet before. .
Hi dawnceleste
Keep us posted! Hopefully your rheumy will agree with you and your primary
Your in my thoughts every day.
Cindy
Bless your heart....love and prayers are with you!
Lori
Good for you Dawncelest.
I have gotten to the point that if I am asked to do a painful or invasive test, I ask the Dr What are you looking for? What will be the treatment if you find what you are looking for? Most of the time, they don't have a treatment, So why should I suffer further by getting the test?
HAHA I agree Dawn I tell my doc I don't want to know about anything else- if it won't be treated and its not doing any harm
Good news friends!my rheumatologist Dr savage says no biopsies nessasary yay! She’s super happy that cytoxin is helping my breathing and neurological for now and will hopefully keep me stable for awhile. . I’ve had very little to no success with any treatments and combinations so it’s a big deal for the both of us 
I’m still struggling with my liver being painful and enlarged so she said it’s time to see the gastroenterologist … my heart palpitations have kicked back up very severe again so she put me back on bystloic ever day. . I’ve been doing so well for a couple of months without any palpitations so I decided to weaned off the bystolic and besides the cardiologist said the only heart abnormality was ectopic beats. . I thought I was cured lol! I know, I was stupid 
so I used to see dr savage every 10 weeks but now Im there ever 4 weeks for my checkup with cytoxin , labs , imaging and other specialist in between. Im very thankful for my team at University of Miami Deerfield … I spend so much time there that they’ve become a second family and they all really care about getting me better:)