Posted 9/19/2007 1:28 PM (GMT -6)
I understand how you feel. I am dx with a sjogrens-like, lupus-like condition resulting from a past liver disease they thought was hepc and now maybe NASH, don't know. Anyway, I have vit over 50% of my body and severe osteoarthritis. I have struggled with repigmenting and have learned that vitiligo needs to be repigmented with protopic asap as my old stuff 13 years old would not repig but my new stuff will, though the protopic seemed to cause more new spots. oh well. Anyway, on the eye stuff. I take a pill called evoxac that is to increase saliva but also adds moisture to your eyes and to your gi tract a little. It gives me enough to sleep. Also, when things are very bad, I use overthecounter gel or if real bad, overthecounter ointment, often with drops to soften the ointment a little. I am participating in a study on vitiligo for Dr. Richard Spritz and if you would be interested in having your daughter be a part, let me know. They are doing DNA samples and looking at some blood work and stuff, and will let me know if they find anything else of medical importance. It is important for people with vitiligo or a tendency to it to avoid phenols, present in hair dyes, some perfumes and other stuff. This will trigger vitiligo in people who do not have it yet or cause new spots. I am so sorry you and your daughter are going through this. I also have a son with multiple medical problems, heart epilepsy, and now bone density issues and ADHD and I still can't get him properly tested for ai disease or sent to a rheumie even once, though he does get raynauds occasionally. It is frustrating to know you are sick, but to not get the docs to get going on it, espeically when you have children. I do not have any antibodies, no SSA, SSB, antidsdna or anything when they last tested, just high ana at times and specific antibodies to organs. My disease is considered secondary, caused by some other disease I have, probably my liver disease. Getting your liver levels tested and thyroid antibodies (esp. TPOs in you and your daughter is important, many people with normal TSH--thyroid levels have extremely high antibodies to their thyroid and are infact very sick, but their pituitary is affected too so it doesn't show up). These things are important to check out. I'm glad you found this forum and I hope you and your daughter are doing well and getting good care. I look forward to hearing from you again!
--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