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In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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Hi Hippi, Rosie, Frank and Marji, thank you all for helping me out with this.
Hippi I am so sorry you are going thru all of this with your son. My heart just aches for you. You're right about knowing our bodies better than they do. I know my liver is enlarged. A friend that went with me reminded me that the rheumy mentioned it when i told her my kidney was really hurting. She said it was probably because my liver is pushing up against it. I guess it's possible? I just don't want to be a hypo-C. and lean on every word they say and or I'll really make myself sick.
Rosie, Marji seems to think a hepotologist would be better. Since this is all new to me I guess I'll just wait until I see the PCP and find out why she is in disagreement with the Rheumy. She's the one that sent me there. Than again she's also the one that has been trating me for lupus for almost a year.
Frank thanks for your input. I will wait to see my PCP I have a lot of faith in her and she is not afraid to send me to somone else if she thinks it's more than she can deal with. She may send me for a second opinion I really won't know until I see her. I'm gonna hole off until next week though. I already have an appt the 31 for my flu and pnemonia shot so I'll find out than what is going on. I pretty sure one more week isn't going to make alot of difference. I just want to throw my hands up though. But a possitive attitude with go a long way so tomorrow is another day and I plan on making the most of it!
thanks ya all
Thanks Pat! you are always around to cheer me on. How is the test going to find out what foods you are allergic to? As for the weather................LOL. I hate the cold weather. I'm totally a summer person. I'm sick of winter all ready and it's still fall LOL.
love ya gal
Well hi Sharen, thanks for the cheering up! I don't know about the patience, I seem to be taking more anxiety meds than usual lol. How the heck are ya? I am so lost around here lately. So many new people. It's like a Lupus explosion.
I'll be looking for the silver lining right along with ya!
Hi Pat, Connie, Razzle Frank, Sharen, Redrose, Thanks for responding.
First I gotta say WOW RAZZLE I'm with Frank! Your post made my head spin. That' is pretty scarey if they give you the wrong thing. i hope they get it figured out. I thought I had it it bad!
Redrose, I'm afraid things are gonna be pretty wacky for you for awhile until after this little one comes along. I imagine it would be hard for a doctor who isn't really up on your particular health issues to know how to treat you. I mean look at how many rheumy's get it wrong and it's their speciality. Maybe you could get your doctors to comference call? Tell that baby Aunty Carol said hi! You know were all gonna be her aunts and uncles don't ya? LOL
Sharen yep you can't even drink the water anymore. Who'd of thought we'd have to pay a 1.00 for 12 ounces of water. Than you still don't really know what's in it.
Connie, thank you , your always so sweet and encouraging! I hope you are doing ok. I'm kind of behind on my reading the posts.
Hi Pat! it wasn't too bad today. I need to go buy me some long johns though. I'm actually having a few issues that I don't know where they come from. Some chest pains and neck pains. Yesterday and again tonight. Yes mother hen if it gets bad I will go to ER. Plus I keep getting this bone popping or somthing in my left ear. Like TMJ or somthing but I have never had it before. I had the doctor look in it when I went to the rheumy he said no infection so that ain't it. I sooooooo do not want to deal with TMJ now. He said I have osteo-arthritis but I don't know if you can get it in your jaw bone? LOL I'm falling apart. I have laughed several times today though so I am thankful for that. I hope you are getting an handle on these allergies and i'm glad the cooler weather is helping you. Oh sure don't worry that it's making ME miserable! LOL. Just kidding. I love ya! and your right it's good to be part of the family!
love to all
It's been a long few weeks for me and this is the first evening I've had time to check the boards. I'm trying to catch up with some of the posts here with reading. I am soooo sorry to hear about your diagnosis/undiagnosis/questionable diagnoses. Been there, done that and know and sympathize with what I know you are feeling. First my lupus dx, then no not lupus it's PBC. I am still questiong that diagnosis as well. I don't know if it is a mental block or the question of is my doc 200% sure now that it is PBC and not lupus. I started taking the meds for it and got sick from them so I stopped and went back to my GI doc and he said it is PBC but for some reason I just can't make myself take the meds for it. I even get the pill out and have it in my hand but for some reason can't take it. I don't know if it is a "gut feeling" that maybe I am questioning if it is a proper diagnosis this time or what. We all are on such a roller coaster of diagnoses and such that I really question anything the docs tell me is real or not these days. I went to a new PCP a few times the past month and a half and was not happy with her at all and am switching again to another one that I have heard really good things about. I am going to make a consultation appointment with her in the next few weeks to go in and talk about everything and see how I feel about her and also ask for a referral for a second opinion about the PBC diagnosis with an actual liver specialist instead of just a GI doctor. A hepatologist is I think what the specialist is called. There is a liver specialist about 45 minutes away from me and I will discuss this with my new PCP and see what she says. I can tell you for fact that the AMA blood test is 99.5% conclusive for PBC diagnosis and that you should at least ask for that test. It is one that your PCP can order simple enough. I've had that and it was positive so you'd think it would be simple enough for my brain to accept right? - NOT. I just feel that on this one, this time, I need a second opinion before I start taking a med that makes me sick and that I will have to take for the rest of my life. I can also tell you that the symptoms of PBC and Lupus are very similar and what defined the difference supposedly for my GI doc was my alk phos liver level has been high for a few years and the AMA was positive. You might also ask your PCP to run a complete liver enzyme blood test to include alk phos and AST and ALT levels as well as complete hepatic panel. I know it is all confusing and scary and frustrating.
I guess I want a second opinion as I have been diagnosed with several different things and then come to find out that they weren't correct and I want TRUE verification of the diagnosis this time. I am getting to be very proactive and almost downright pushy when it comes to my doctors and asking questions and demanding results. I've done a lot of research lately on both lupus and PBC and with my symptoms it could be either or both diagnoses and there HAS TO BE some way to confirm for sure what is going on.
I hope you can get some proper clarification of your diagnosis as well soon. The life of autoimmune disease stinks doesn't it. My new phrase of my life is "if in doubt, ASK QUESTIONS". I don't just take the first dx as a sure thing any more.
What was it anyway that made your rheumy diagnose you with PBC and not Lupus? Just curiousity on my part.