LUPUS UK
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Update went to pcm

I Went to my pcm she isnt completely on board with neurologist but she ordered a 24 hour urine and said if my protein levels are high enough she will order a biopsy but didn't submit the referrals for me to a rheumatologist or go back to my kidney Dr which I'm peeing blood an Neuro says my anti double stranded dna test was high pcm says its equvocal I'm still so confused ugggfgg I wanna pull my hair an my teeth out haha but I know I'm dumping a lot of protein I have been for years but I've never had a biopsy they just assumed it was diabetic kidney but I was only diabetic for less than 4 years when I got told I had kidney disease so idk I just wanna be better an everyone say rheumatologist is the dr to get to but my pcm is not trying to send me there for what ever reason I figured testimg positive on the ana an the anti ds dna having off the wall symptoms an kidney disease an peeing blood an sensitive to sun an hives break outs would be more than equvocal but idk y'all I just don't KNOW

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Try a different Primary Care Physician ?

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So you're still having this trouble... with your doc??

Couldn't agree more, as we exchanged in previous posts, that you need to be seen by a Rheumatologist. Your doc appears, from my point of view, to have his/her own personal reasons for questioning the consultant's views of your results. The bottom line is that this is slowing down your treatment. I don't mean to come off harshly here, but instead of pulling your hair out, maybe just pull the phone out and get another appointment with another doctor as Freckle1000 says? I know it's not easy to challenge doctors and perhaps you feel a certain loyalty to yours for your own reasons, and it can be hard to believe this when you are the ill one, but sometimes you have to take the reins of your own health. When I tell my GP that a consultant has asked me to ask her to do something, she does it. Yours should have the same respect for the consultants and for your well-being above all. If you're seeing your Neurologist any time soon perhaps ask if they can include a statement in their follow-up letter suggesting the referral to Rheumatology. I know, easier said than done. But I'm feeling concerned for you.

Btw, I had an equivocal result in Neurology recently. My Rheumatologist rang a lab in Oxford to get to the bottom of it as she didn't know what it meant and wasn't too egocentric to ask. She was told an equivocal means positive and so I was to get that tested again to be sure it wasn't a false positive. Which, thankfully it was. At the very least someone should be double-checking your borderline results, or ringing Rheumatology for advice.

Good luck with all of this!

Panda x

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My neurologist phoned me personally today 2 days after my pcm appointment and said that he wants my 24 hour urine results as well an he said if he sees reason to do a biopsy an she refuses to do so he is phoning her directly and if that doesnt do it he will personally help me locate a doctor on the grid that will help me get further testing I have had 4 total ANA tests that I was unaware of an he said they are climbing but the anti ds dna is high not equivocal I just wanna feel better an not drop dead is what I told him lol he said we are on a mission an he will do EVERYTHING in his power to help me💞

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OH that's GREAT!!!!!

You must feel so much better and supported now. Excellent news!! I'll stop being concerned for you about the silly doctor issue. Try to do what you can for yourself as well.

All best. x

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Yes having one listen definitely makes you feel like ur not completely at a loss I just wanna raise my kiddos 💞

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It took a neurology Doc. to pick up the pieces and literally tell off all the other Docs. on my medical team - 'to do their job and listen to what I was telling them' last time I was unwell. All it takes is one senior 'good guy' to advocate for you and you're safe.

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💞he is livid he said she gonna let you die and but I'm not that dam shady I'm do everything I can to save ur life an we gonna rattle her cage I was like I just don't wanna die an I wanna feel better💞 he said well I'm gonna do everything in my power💞

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