So my rheumatologist at University of Miami called today with my final note from Hopkins. . They were definitely lacking any insight into my case other than the observation of laxity of ligaments and severe vitamin d insufficiency… my blood showed the usual positive ANA and antibodies to phospholipids and low C4 protein so my diseases are still very active. I told her I didn’t feel comfortable having the lung, liver and bone marrow biopsies that Hopkins said I should have ASAP, thankfully she doesn’t want to or think I need to be put through any of them. . I do have lung nodules but there small and scarring but minimal so we can do a contract CT instead. . My liver is enlarged with hepatic echotexter but my functions are good enough so she’ll monitor it… I’ll continue cytoxin once a month, it helps my lung function, fatigue, neurological symptoms and hopefully will stop my musculoskeletal deterioration and help my liver. … my dr said I might never have a remission but she’s doing everything to try and stall my disease activity in serious before I get to critical. . All I can do is hope and live my life the best I can so we’ll see???
Recent studies have shown Vit D levels that are low are an indication of disease activity- goes along with your other labs You still take supplements and if your levels start to come up it helps with fatigue but low levels are an indication that your disease is utilizing more Vit D than your body is able to absorb.
Thanks for all the information and experience friends:) my mom has RA, MS, and moderate to severe osteoporosis , she’s considerably hunched over … surprisingly she’s never had a vitamin d deficiency , I thought that was a part of osteoporosis . . When I was at at Hopkins the Dr referred a lot to genetics and that I’m most likely a victim of genetic predisposition but my disease path is waaaay different than my moms… she started getting sick with the RA symptoms in her early late 40s early 50s … she was able to achieve remission with plaqunill and IV Hummari for almost a year … she had her first TIA several years later witch began the MS diagnosis now she’s 67 . She’s just starting to have periods of shortness of breath while walking but with no pain or or pressure like i have so besides that we have no disease similarities. . Mom was adopted so there’s no family tree to trace back. . My daughter is 15 now…shes health , happy and gorgeous but before she goes off to college I will absolutely have genetic testing done for her. If there is any supplement, exercise, dietary changes that could be made or adjusted to spare her from this terrible process my body is going through we’ll do it!!Hopefully my crappie genetics fizzles out with me