Connect
Seeing a second Rheumatologist, because the first one I was referred t
I’ve struggled with joint pain, rashes, recurrent diffuse hair loss, severe fatigue and more for 5-6 years. I had a flare 8 months ago that almost killed me. Low back pain and severe hip and thigh pain and weakness with lower leg pitting edema started 2 months prior to everything else during the bad flare. I had severe leukopenia(1.7), anisocytosis, anemia, high AST,ALT,ALP,LDH, hepatosplenomegaly, urine had waxy, granular & hyaline casts plus leukocytes, protein, urobilinogen and bilirubin. (Still have bad urinalysis, but preserved egfr) Suddenly developed bad raynaud’s, fevers, eyelid edema.
After things began going back to normal bloodwork wise, the hip/thigh pain and weakness stayed until a 30mg steroid taper 5 months later. Nothing touched the pitting edema, joint and muscle pain and raynaud’s, still have it daily. Very bad diffuse hair loss followed the flare too. My Avise test came back positive for Anti Beta 2 glycoprotein (54), Anti Cardiolipin (35)and anti RA33 (44.4) and I have high inflammation markers.
I was already PTT-LA positive and PS/PT positive a while ago. I have really bad livedo reticularis all over my body. And many more issues. I’m waiting for an appointment with a second rheumatologist that my doctor referred me to, because he referred me somewhere else first and that doctor was unbelievably mean and immediately dismissive. He walked in the door and said “I don’t see anything autoimmune here” before asking me even one question and then proceeded to talk trash about my GP who is amazing! This doctor has only been a doctor for two years and he needs to be somewhere reading X-rays for a living, away from people. He’s inexperienced and cocky.
After that experience I am terrified about my next appointment. I just don’t feel good and want to feel better. My ANA is negative, but I clearly have something autoimmune. I was told it really looks like UCTD due to the symptoms and antibodies I have, but lacking others. I don’t care what they call it, I just want to feel better. I guess I’m just venting, because I need to.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
ANA is often not helpful. I wish there were something better. As a lab technician I am beginning to think ANA is like a sed rate…just not very helpful in the diagnosis…but the doctors love them!
-
Like -
Helpful -
Hug
3 ReactionsIf a doctor dismissed me with “I don’t see anything autoimmune here”
I would be temped to respond just as you describe here:
I don’t care what you call it, I just want to feel better.
He might have a second thought about being so arrogant to a patient.
-
Like -
Helpful -
Hug
3 ReactionsYou are making the right move to avoid gaslighting by inexperienced or
inept care. If you have good access to care you may need to work with a
medically focused Dermatologist as well. Skin biopsy may be a helpful test.
There are referral medical center groups that have combined rheumatology and
dermatology clinics for complex disorders. Hope your new physician is
interested and caring to go the extra mile for a workable treatment plan
and diagnosis. Collect all your history and lab. A good specialist appreciates
a list of your questions in preparation for the consultation.
-
Like -
Helpful -
Hug
1 Reaction@bswpb yes, it’s unreal the weight they put on them. I was literally on my deathbed and they were like🤷♀️
-
Like -
Helpful -
Hug
1 Reaction@seniormed yes, thank you. I am printing out all of my lab work and taking it with me.
@tillymack my GP said I am the third patient that he referred there who had a horrible experience! He said he will never send another person there. It’s the only rheumatologist in town, so I’ll have to go the next county over, but it’s worth it to get medication and feel better.
-
Like -
Helpful -
Hug
1 Reaction@nikkiwill prayers
-
Like -
Helpful -
Hug
1 ReactionIm seriously thinking about dumping the rheumy I see now , but its government funded , i cant afford private so I dont have a choice but sheesh
-
Like -
Helpful -
Hug
2 Reactions@tisme it’s outrageous how some doctors treat people. They don’t care how bad off you are. Compassion is a requirement to be a good doctor. I hope you can se a new one soon.
I’m sorry you are having a difficult time. If it were me, I would seek out a Functional Medicine provider & go through the process of eating clean, eliminating gluten & sugar, fixing your gut & clearing the toxins from your body. I’m positive that some of your issues would clear up.
-
Like -
Helpful -
Hug
4 Reactions