Posted 7/6/2007 12:32 PM (GMT -7)
I went to the rheumy on Monday. She said she will not dx me with SLE, but changed my dx from MCTD to UCTD once I pointed all the problems with a MCTD dx. She also tested my blood sugar, iron, and creatnine levels in my urine. She called me with the results yesterday and my iron is 10.5, blood sugar was 69 (normal for a woman my age is 80-120), and I have elevated creatnine levels. I have a lot of issues with my spine (Akenosing Spondylitis, DDD, Spondylosis, Anteriolisthesis, and a rare anterior herniation of the T7-T8 disk) and she said that there was nothing that could be done for it. I am going to have to suck up the pain for the rest of my life according to the doctor. She prescribed me Plaquenil, Tramadol, Flexeril, and Meloxicain. It is just really hard knowing that I'm almost 22 and am going to be in pain the rest of my life. I haven't come to terms with all of it yet. Thanks so much for all your advice and help guys! I really appreciate it!
Posted 7/6/2007 2:50 PM (GMT -7)
Hi Mandolyn--
At twenty eight I started losing all my pigment and getting hyperpigmented areas. My liver enzymes were off the charts, my ANA high, my antithyroid antibodies high, my back a mess. I didn't know it till the pigment stuff. They tested me for hep and I had hep c antibodies, they did a RIBA and it was inconclusive. They did not do a pcr. I was treated with interferon, which nearly killed me and my rheumie tells me from the records he got it looks like I never had hep c. My biopsy was completely normal, healthy liver. It's not now. I have weird AI problems but no ds-dna, even though speckled ANA can get high. My TPOS over a thousand, so I have hashis and low adrenals. I'm having bad sun sesitivity, have lost my repro due to pco disease and endometriosis, basically, diabetes, and very very severe fatty liver disease. Everyone on my dads side dies of cirroshis fairly young, no exceptions. I was diagnosied with Sjogrens, but my rheumie won't connect all the rest together (and gi problems and some brain damage and anticardiolipin antibodies and past heart damage) and call it something, even though it all hit at once at the same time. It took me 13 years to see a rheumatologist and the first one was a quack who told me there was nothing at all wrong, just depressed! I do have a problem taking pred, but my immune system is toast. There's a really interesting article about cytokines and anticytokines which might help with your battle
I am in the class of excess alpha-interferon, before alpha interferon treatment, so they really killed me with it. They couldn't have given me anything worse.
Health care these days is ridiculous. The doctors don't know, and the ones that do don't care. I feel grateful for the little bit of help my rheumie offers. I'm sure he sees people sicker than me, so to him, I'm just a real mild case or just an unhealthy person.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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