Nothing left?!?!

So today I saw my hematologist and rheumatologist in back to back appointments... first the hemo, as expected she ordered several labs I haven't had checked since I saw her 2 ye ago and some specific to animia. Like I said in a previous post she is very smart and nice and even apologized for not having defiant answers for me today. I assured her that im a professional patient and didn't expect any today anyway:) she did said just from looking at my last labs and symptoms its looks like "animia of chronic disease" but because im having thrombophlebitis issues and have an inherent protein C deficiency more investigation has to be done. Next was my rhuemy... Needless to say a lot has happened with my health in the last several weeks since I saw her. We both agreed for me to not start on fosamax for my osteopina. I did my research and was not ok with this treatment unless I have osteoporosis. I'll continue on calciferol and calcium gummies. All my t scores are at 2 or 1.9 , the wort being the left side of my neck(no wonder it always real hurts)with my L1-4 in second. She has discontinued cyclosporine and said there's nothing left for treatment, we've tried everything with very little to no help. Right now im riddled with inflammation so when I asked what about how to treat that now she she said turmeric... Thankfully I just ordered have a giant bottle of that ! I can't even take antinflammtories because of my gastritis and my tissue paper thin stomach lining:/ honestly its pretty upsetting and scary to be on NO immunosuppressives, my immune system is so overactive it to 3 cytoxin trements to slightly lower my WBC! Its chemo so if you wanna suppress an immune systems that will do it but not mine of course!a part of me is relived to not have to have to poison myself daily. I'll still have to take all my other meds for heart , lungs ,neuropathy, stomach, blood and pain. Im scheduled to see her in 2 months but can always call or squeeze in her schedule in an emergency. My boyfriend is pissed and freaking out about this "nothing left "issue. He's ready to pack up all my records and start all over aging at another rhuemy, I said absolutely not! He's just afraid I'll shrivel up in to a ball and die but I keep reminding him NOT terminal like our friend with ALS.. I've definitely got a lot going on right now so like I always say im just gonna take everything one day at a time:)

Your boyfriend might not have such a bad idea about trying a new rheum. I’ve tried about almost all the medicines to control my lupus with little success. My rheum doesn’t really want to try anything new so I’m actually going to another rheum next week to get a second opinion (and who knows she might become my new dr). It honestly doesn’t hurt to get a second opinion. Doctors are different, have different beliefs, and some are more open to other alternatives. Good luck and I hope it works out

I have had great success with using the Turmeric. I'm so surprised that your dr recommended many drs don't believe in natural meds. Also try ginger, it will help your stomach, and is also an anti-inflammatory. I also use the tart cherry juice in caps, liq. concentrate, and enjoy the regular juice. I can really tell the difference in how I feel if I run out...never run out!!!!!!! But, all that said, your boyfriend might be right in checking out another rheumatologist. BUT, really research them out first. Do you have a teaching hospital near you, are you able to go to Mayo, Johns Hopkins, Cleveland Clinic,'s so important to beat all the rocks to get the best care. Good luck, and feel better

Ann A I applaud you for your amazing memory, you’re awesome in so many ways! Everything you wrote in your last post is the truth of the matter. My rheumatologist at the esteemed University of Miami Sylvester referred me to the “holy grale” of rheumatology, John Hopkins! and was seen by the the head honcho of the department but she was baffled too … the only suggestions she had was lung, liver and bone marrow biopsies with no real reason other than maybe will find something and of course what ever I am suffering from is very serious …I didn’t even have abdominal organ involvement then (January 14) except a little non alcoholic fatty liver. I didn’t want to be sliced up a bunch and ALL of my Dr’s at home feelt the same . I am really very happy with my overall care, I am very good at being able to tell if a doctor relationship isn’t working out. I just fired my pulmonologist because he was getting frustrated in front of me about my chronic dyspena and airway issues , getting very short with me and would almost yell “you need to tell your rheumatologist!” . Well duh , she of course already knows! ! ! UM Sylvester just add a pulmanologist to their staff at another near by location so I’ll be seeing him soon :slight_smile: Overall im very happy and comfortable with my care. Every one is on the same page so I don’t get conflicting diagnosiss :slight_smile: sometimes unfortunately some people can become very sick and nothing in the universe that is able to reverse it. I haven’t lost hope and neither should any of my friends on here!! Everyone is always so thoughtful to share advice and methods to possibly improve someone else’s life and that is very special!xoxoxox