Hi Everyone, I have a doctor’s appt tomorrow. Just got back my most recent lab results. Before going into the doctor’s I wanted to reach out to this group and ask about two concerns.
1st, I think I have Vasculitis. I told the doctor at my first appt with her (my second Rheumatologist. After 4 appts with the first Rheumatologist, I switched doctors). My new doctor was sick at my first appt and I felt rushed. I don’t blame her, she was very ill. But she never addressed the Vasculitis concern. I don’t even know if that’s what it is. So on my back, over my right shoulder blade I kept getting a fist sized bruise. It would appear for weeks, then disappear. No reasoning behind it (I hadn’t injured myself). When it would appear, the area would drive me nuts! Painful. Itchy. Sometimes so painful I just couldn’t deal with it. But for the past two or three months the bruise seems permanent and possibly now getting darker. Idk what it is, but I’m thinking Vasculitis. It’s one of the things that bothers me most and when it’s inflamed I just can’t handle the pain. What do you guys think it is and should I push the doctor on it? (Should I be concerned?)
2nd, for the last 4 1/2 years of testing, my liver keeps appearing ‘suspicious’ (the different specialists’ term). I’ve kept all my labs and other medical records in a file and looking back on the last two labs I apparently have liver cirrhosis, which is really humorous considering I don’t drink alcohol at all (not even socially). I haven’t used any Tylenol or other such products for over 5 years. I eat super clean and stay away from meds. I use to drink diet sodas but haven’t for over 5 years because I had heard they were hard for your liver to process (and this was before hearing I have a bad liver!) I’ve avoided the anti malaria meds this doctor wanted to start me on since the previous test had indicated a suspicious liver. So again, do I need to push anything?
And... I think to go along with the liver cirrhosis (I guess this would be question number 3?) I think I have Ascites? Does anyone have experience with that? So the first time around when things got so bad they knocked me down and out for over 4 months and I finally went to see a nutritionist, I had also put on about 40 lbs during that time! (Yikes!!) I got it off as things started getting better. A little more than a year and a half ago I started going through it all again, but with facial rashes and swelling. I put that weight back on. At that time I told my husband I looked like I was 7 or 8 months pregnant! My abdomen was so extended!! It’s gone down some, but still kind of weird. (Looking 4 months pregnant now.) Now, reading about liver cirrhosis and trying to figure that all out, I’m wondering if I have something happening called Ascites? It would make sense. Does anyone have any advise or experience with Ascites?
Thanks everyone. I know this was long and that everyone has their own issues they’re dealing with, so thank you in advance.
Hi Brook. I am worried about you. It sounds like you are having spontaneous bruising. While this could be vasculitis, your doctor should really investigate your liver and possible liver dysfunction. Your liver makes most of your clotting factors. If they are low because your liver isn’t up to snuff, you can get spontaneous bleeding which is what sounds like is happening with your shoulder. Please push on your docs about this. It isn’t normal. You can play the what autoimmune disorder do I have game but right now someone really needs to address your liver ASAP. Once addressed, you’ll probably find the answer to the what do I have question. I do have one question for you....are you swelling from head to toe?
Hope this helps. Please let us know how your appt goes. Many many hugs sent your way. ❤️
Lots of inflammation with muscles and joints, but visible swelling only happens in my face, mostly around my eyes. Though it was happening constantly last year, it started lessening earlier this year, and doesn’t happen much right now.
If you mean swelling in my ankles, and that type, no, never. My abdomen has been quite extended for a little more than a year and a half.
I appreciate your reply. I’ve been concerned about this ‘bruising’ but wasn’t sure if I was being a hypochondriac over it. It really can be very painful when it’s acting up, so thank you for the dose of courage you’ve given me in bringing it up again to the doctor tomorrow.
You’re welcome. If you’re having swelling around the eyes and in the belly, I’d say this could be due to malnourishment or gut issues like malabsorption. Could also be from kidney dysfunction. Happy to hear no head to toe swelling which makes ascites very unlikely but not impossible. These issues need to be addressed by a healthcare professional. Labs checking coagulation, liver, kidney and blood counts should 100% be obtained. Tell them you’re peeing blood if you have to. That’ll buy you at least 3/4 of the labs based on guidelines.
Hi JMiller623 I saw my Rheumatologist just now. She said she’s never seen what’s going on with my back or anything like it, so she’s sending me to a dermatologist for a biopsy.
Good to hear!!! Looks like you’ve had smooth muscle antibodies checked which were negative. This helps rule out most primary biliary cholangitis (inflamed bile ducts) and autoimmune hepatitis. Hopefully the dermatologist can help. If it’s bruising and truly spontaneous aka without injury, I’d still want coagulation, liver function and blood counts. I hope you find some answers!
Hi Brooksidecourt sounds like you have a lot going on at the moment. I have lupus sjogrens and two years ago diagnosed with PBC liver disease which is autoimmune and can go hand in hand with lupus. Mention to your gp about PBC as it can be very serious. Raised liver function tests is one symptom of PBC
Kingsnorth, thank you. I see my Rheumatologist today (in about 3 1/2 hours) so I really appreciate the advice. I will ask her at my appointment. I have a long list of questions I have written down, along with a copy of my last labs, so I will ask about PBC. Thank you!
I love this group and am so very thankful for all of you and what you help each other with. Kind and open hearts who look past your own pain and troubles to lift up others. Is that not Christlike? Is that not virtuous and long suffering? Bless you all! Thank you all for the wonderful people you are! 🙏 My prayers and best to you all.
Good luck keep me posted to check for PBC first port of call is a blood test for AMA not ANA which is the blood test for lupus and sjogrens ANA is specific for PBC x
Thank you. I have had many ANA tests. Some come back positive and some negative, but I don’t believe i’ve had an AMA tear, I will definitely ask for one.
So I’m on my way to the doctors (my husband’s driving me) and I got curious about one of the recent blood tests I’m going to be discussing with the doctor. It’s the Actin Smooth Muscle Antibody. Mine was 8 (middle range normal. Yey!) I googled it and it is the AMA you are talking about. Does that ever have false negatives like the ANA? If not, then i’m all clear for that. Thank you for that in-site. I’m so happy to know my doctor was right on top of it!😊
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