Hello Lupus Forum Community, I hope I am finding u all as well as can be expected. I am reaching out to u for help, as I just had a doc's appt that upset me so much I can barely put it into words & u can help me simply by responding to me w/ your knowledge & experiences.
I am not a newbie to lupus, a veteran rather, as I was officially diagnosed 12 years ago w/ lupus, fibromyalgia, & Hashimoto's & they are what I am on disability for. I live in a small town of NH & there aren't too many rheumatologists to choose from, & not having my own transportation makes me unable to travel far for appts. (I take a shuttle provided by the local hospital.)
My rheumatologist is extremely tough to get a lupus dx from, however she has dx'd me w/it & fibro. I also saw another rheum when I moved away for years, who arrived at the same dx's after doing her own testing. Then I moved back here so I went back to my original one. The problem I have w/her though, is she is extremely conservative with rx therapy & will only rx me Plaquenil b/c, in her own words, she does not rx immunosuppressants unless there is severe organ involvement, and my main issue is my crippling arthritis, my lung & kidney involvement are minimal & under control. But I am in constant pain, my quality of life is low, & I've just been recently diagnosed w/ peripheral neuropathy due to lupus by a neurologist, & he, as well as my PCP, believe that lupus is not only causing me enough pain to warrant something stronger, but is causing me some damage to my body as well.
So on their recommendations, I made an appt w/a new-to-the-area rheumatologist to see if he'd feel different. Unfortunately, this young man is very sick (his office is keeping whatever he has confidential), so at first they kept rescheduling all his appts, but then they had an older rheum from another practice take on his patients as it became clear he would still be out for some time. I went in to see the replacement doc to see if he'd agree to rx me immunosupressants & boy was I thrown for a loop when he said he believed I definitely had the Hashimoto's due to the extremely high anti thyroid antibodies & TSH I always have, but does not believe I have lupus & wants to remove my Plaquenil based on one recent blood panel where my ANA actually came back negative although that same blood showed my anti double stranded dna antibodies to be 1:160 by CLIFT where a result of over 1:10 is considered positive by that lab. My female rheum did these bloods & she didn't say anything about the neg ANA, which has only been neg this one time & is usually a high pos. She only commented on how the high anti ds dna validated the lupus dx.
I also mentioned my hx of elevated ESR's, CRP's, anemia, proteinuria, malar rash, mouth sores, & extensive hair loss on head, arms, & legs which, I said, has since grown back a lot on my head. And he said the ESR's, CRP's & hair loss are all from my Hashimoto's and he ignored the rest. He said lupus hair loss on the head usually involves a lot of scarring and does not grow back, however this contradicts what I have researched. I do know that Hashimoto's can cause hair loss too though, so maybe with that we can't identify which is from which.
I said, "So based on that one & only negative ANA, you think I only have Hashimoto's & fibromyalgia, but not lupus?" and he rolled his eyes, sighed, & replied exasperatedly, "There is NO such thing as fibromyalgia!" He said it like he had already told me 20 times & was sick of repeating himself.
I believe fibromyalgia is real & so does my PCP & the two other rheumatologists who diagnosed me w/it.
So my main question to all of you, and please everyone answer that has any opinion at all b/c I am so upset at this it would really help me to get a consensus of what people who understand lupus think about this. I am very smart but I have emotional problems, and when a doc treats me like this I wish I could just be angry & somehow prove them wrong or simply just not return, write him off as a quack, and be confident in my other docs. But instead I start to question everything, including my own identity, and curl up in a ball, beat myself up for not being stronger, and wish I would just die. I know, pathetic. But that's me.
Anyway, my main question is this:
Have you ever heard of a rheumatologist or endocrinologist believing that high positive levels of anti ds dna antibodies, showing up everytime blood is drawn, being indicative of Hashimoto's & only Hashimotos? And not having it indicate lupus, MCTD, or UCTD? I have Dr.Wallace's book & he says antiDNA ab's mean lupus over 90% of the time (not that 90% of lupus pt's have them, only ~50% do).
My 2nd question: has anyone else ever had a NEG ANA but a POS anti DS DNA from the same bloodwork? and what does this mean? the ds dna is in the nucleus so wouldn't it just mean u don't have antibodies to the entire nucleus right now but you do to the ds dna inside of it? I have no idea, thats just a guess.
My 3rd question is: do you think it right to remove someone's lupus dx & medication all on the basis of one time being ANA neg but still positive for ds dna? since when can a lupus pt's ANA not fluctuate? who is ever 100%, 100% of the time? I understand over 90% of those w/lupus will have a + ANA but so have I every single other time it's been tested, at least 6 x's.
And my 4th question is: is he wrong or right about lupus hair loss being very scarring and not growing back? B/c everything I've ever read says hair loss from systemic lupus is not scarring & can grow back. And I'm thinking maybe he's more accurately describing DISCOID lupus, which only affects the hair & skin but affects them severely.
Please ask yourselves how you'd feel if tomorrow you went to a different rheumatologist and this happened to you after being treated for lupus for 12 or however many years, then please tell me how you would handle it.
I really need help with this kind of stuff b/c I lack emotional reasoning and coping skills and something like this hurts me so bad I don't know what to do with it. I just wish I could go back in time & not have seen this guy.
Please, what do I do or think?
And how do others deal with the doctors that don't believe Fibromyalgia even exists?
I am extremely interested in reading every reply so please, even if you normally read these but don't respond, I ask of you to respond if you will b/c I really care what everybody thinks & I am really hurting for some constructive feedback and/or validation here.
I thank anyone who took the time to read this & thank you even more for responding.
Sincerely & with love,