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Deemarie1223
09-20-2012, 06:09 AM
Hi everyone! I've missed coming here but I took a break cuz I was so overwhelmed with life and the fact that I didn't have a final dx yet. I was waiting to post after I saw specialists at dartmouth, which was yesterday. I joked I was going to have a sit-in until they told me SOMETHING. Well they did...they told me that as of my last bloods my ANA was neg (after reading my lab reports they are not doing titers they are just doing a pos or neg so I don't even know what my numbers are) they repeated the same non titer test yesterday. The antiphospholipid was confirmed (which I knew) and I gave the doc a symptom list and had pics in my phone of various rashes. I thought I was prepared! I had all my records...I was ready!

Well, she barely looked over the symptoms focused mainly on the anitphos and didn't WANT to repeat the ana but I begged. I also pointed out thatt in feb my c-reactor was 16! (Normal is 0-4.9) which is an indicator of a flare and a sed rate should have been done, but wasn't. I asked for the c-reactor to be repeated and a sed rate and she only ordered an ana and a urine protien test for protenoria. she literally said "I have to be careful how I word this..." I cut her off (I was being very patient and straight forward until this point) and I blantly said...cuz your gonna tell me its all in my head, to which she responded "ohhh no! The antiphos is def real and you need to see an hemo, and if the bloods from today come back pos, which I doubt, then ill take over. I think you def have some myofacial pain so with that combined with the migraines and fatigue, I'm inclined to say fibromyalgia. I'm not going to try plaquinel or pred. Cuz I don't feel its neccessay. Come back in 2 months"-I was crying at this point. I said what about the gfact that my hair falls out in clumps and I have rashes consistant with an autoimmune disease. I told her I meant no disrespect but I've been fighting this battle for yrs and I'm sick and I'm tired and I just wanna feel better. I mentioned all the people (here and in my life) who have had neg anas but def have lupus (including MY Mom and best friends mom who is now in stage 3 kidney failure and over the last 25 yrs she's had many neg anas and many pos) to that she said this "it is HIGHLY unlikely to have a neg ana and have TRUE lupus, no matter how many outward symptoms you have I will never dx lupus on a patient with a neg ana. It just doesn't happen." I mentioned the 11 sympotoms of which you must have 4 (and the bloods are in it) and I showed her 7 symptoms....nothing. she never once asked to see my pics either, even after I told her I had them.

I then went to a nuero who is going to give me a nerve test to confirm neuropathy and he said I most likely don't have anything serious neurologically and based on my symptoms I have fibro. We didn't get into the ana things cuz he's not a rhuemy.

So there it is...I finally got a dx..fibro with antiphospholipid syndrome. I learned yesterday that I've never had a sed rate done nor have I ever had any ana titers done. Not that its that important, but id like to know my ana numbers. Even with a high c reactor, they never did a sed rate. So here I am, with a dx but in my heart I don't think its right. Nothings going to change and that's that, unless my ana comes back pos this time.

I'm thinking of ditching dartmouth and asking my primary for a refferal to boston for a second opinion. Idk, sorry to ramble...I prob didn't even get half of the apt written but you guys get the gist. I'm feeling more discouraged then ever now and its not really cuz I didn't get the dx I "wanted" its cuz she didn't listen, she didn't order the right tests, and most of all she focused soley on a blood disorder I already knew I had!

Hope everyones doing well!

jmail
09-20-2012, 02:46 PM
I can't tell you how many times I was told, in one form or another "I don't know what you have" and/or "but you're a man, and can't have lupus". Very frustrating. My wife has fibromyalgia, and it ain't no picnic either. She's on Lyrica and a few other meds for her thyroid ("plain ole" hypothyroidism), and the last few years have been much better for her. She had a similar experience to yours with the docs. That "specialist" you saw, is apparently over-qualified for their position of donkey's bee-hiney-butt...

magistramarla
09-20-2012, 09:49 PM
Hi Darla,
Many of us have had to deal with docs who will only rely on blood work and refuse to look at the whole patient.
I think that it's a good idea to try for a referral to another rheumy. You need to find one that will listen to you.
Hugs,
Marla