Warning: LONG post!! I do apologize, but I feel that I should share these details because it will give you an idea of the long and winding road you might follow when you set out to figure out what's wrong with you! Please keep in mind that, according to my doctors, I'm complicated (medically speaking); I sincerely hope that you don't have anywhere near this many disorders and medical issues!! :)
My journey to the diagnosis of lupus was convoluted...my family has lots of problems with AI diseases. Two of my aunts died from complications of lupus. My father had RA; I have a daughter with Hashimoto's thyroiditis, another with lupus and Addison's disease, three grandchildren with either celiac disease or NCGI, a niece with Graves disease.
But, until a couple of years ago, my only health problems (that I knew about
) were Hashimoto's thyroiditis, "IBS", asthma, and mild psoriasis.
two years ago I started to have problems walking or standing for long periods of time (more than an hour). Then over several months, the time I could stand or walk grew shorter and shorter....half an hour, 20 minutes, 15, 10.....etc. I complained several times to my primary care doctor and she started to treat me as if I were a hypochondriac when xrays of my lower spine came back normal. But by spring of 2008, I was in agony after standing too long....my lower back would spasm violently until it felt just like I had a midget on my back beating my lower spine with a 2x4.
The funny thing was that I was having all sorts of other weird symptoms as well: vertigo, violent migraine headaches, abdominal pain, muscle spasms in my feet and hands, tremors, blurry vision....very strange. I too had the feeling of "heavy legs", weak muscles in thighs and upper arms, etc.
At the end of April I asked for a blood test and they discovered my liver enzymes were through the roof: AST/ALT were each higher than 1400. By June I'd been diagnosed with autoimmune hepatitis, meaning my immune system was trying to kill my liver. So I was put on high doses of prednisone and Imuran to suppress the immune system.
But things kept getting worse....in July I was diagnosed with fibromyalgia and rheumatoid arthritis. By August I was in so much pain I was forced to get a wheelchair. I saw a neurologist in September; he did a nerve conduction study and found several pinched nerves, but none of them explained the pain, and my MRIs and my EEG have all been normal so far.
In fall 2008 I saw a gastroenterologist, who tested my blood, biopsied me, got nothing but negatives, but still suspected celiac disease because I have one of the main celiac gene markers, HLA DQ8, plus a family history of celiac, plus a positive response to the gluten free diet. He told me he had expected negative test results because I was on prednisone and that would suppress the celiac antibodies. So I found out that the "IBS" I'd had for decades was really celiac disease!
I started to feel a lot better gluten free, but still had various symptoms that just wouldn't go away, especially the pain in my back. I was told to be patient, that it could take a couple of years to be 100% better!
Then few months ago I began to experience some of my old neuro symptoms again: vertigo, migraines, tremors, etc. I was upset! I had thought that the gluten free diet was the answer to all of that!! Around the same time, I stumbled across discussions in one of my celiac forums of even more restrictive diets (SCD, Paleo diet) and people who swore that they felt MUCH better when they stopped eating all grains.
It took a while, but eventually my husband and I decided to try going grain free....we've just started this fairly recently, and we've fallen off the wagon a few times, so I don't really feel like we're grain free quite yet. I have noticed that my last lingering gastric symptoms have disappeared though, even on our imperfectly grain-free diet!
So sometime this past summer I realized that I needed a new rheumy....my old one just wasn't listening to me anymore. I found my current rheumy through my sister-in-law, who has MS. This doctor is GREAT! And he's very proactive, and he listens to me!! :)
He's the one who diagnosed me with lupus. When I first came to see him I brought him lots of my medical records and he listened to me and looked through my old blood tests and decided to give me more blood tests. I came back a couple of weeks later and even though my anti double-stranded DNA antibodies were high, my ANA was negative. So he said I didn't have lupus. Of course, I was happy about
But I kept feeling worse and worse and worse. Then one evening I saw myself in the mirror and I had a flaming red malar rash! So I took a picture of my face and emailed it to him....he responded by saying to come in to see him right away.
After further discussion of some of my various lupus-y symptoms such as photosensitivity and nose-bleeds, he told me that even with the negative ANA he decided to give me a clinical diagnosis of lupus, because of all of my symptoms, the malar rash, the anti-DS DNA, and my family history of lupus. He told me that all of my neuro symptoms, everything, were probably due to a lupus flare, and promptly increased my prednisone dosage.
OK....more pred did seem to help a little bit, but I'm still having vertigo, vertical double vision, blurry vision, difficulty with balance, etc. In fact, two of my doctors have now told me I should no longer drive!! :(
The DMV is in the process of yanking my license. The hearing is next week, but since the neurologist said in the paperwork that I shouldn't drive, I don't think that the DMV will argue with him....I'm sure I'm going to lose my license.
I'm still not convinced that all is due to lupus....maybe it is, maybe it isn't. My rheumy thinks I have CNS lupus. But one of my blood tests for Lyme disease just came up positive! I know Lyme disease can cause neuro symptoms too....and can trigger autoimmune diseases. I'm currently waiting for results of a more sensitive Lyme test (Western Blot) to come back.
Anyway, I keep hoping and praying that I will someday know exactly
what is wrong with me, and that I will figure out a way to get better! And I hope and pray the same for you! :)
Sorry for my verbosity!! Happy Holidays!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.
Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAPautoimmunediseasesgfliving.blogspot.com
Post Edited (nasalady) : 12/23/2009 12:25:14 AM (GMT-7)