Posted 9/19/2007 11:15 AM (GMT -6)
Crmomo,

Welcome to the forum. Des and Kris have both given you good advice and I too hope you'll hang out here with us. I too have sjogren's but it's beyond me which of my symptoms are caused by which disease. My main concern is whether or not I'm on the best regimen of meds to control what I have.

You don't mention whether or not you take plaquenil or anything else for your sjogren's and reynauds. I understand your fear of going to the doctor but if you do go to a good rheumy they may be able to help you and answer the questions you posed here. I have reynaud's but it's very mild so I've not had to deal with the discomfort you describe. Maybe others here will be able to give you some suggestions.

I can, however, offer you my support because I so understand what you're going through. I remember that after being examined by my rheumy a couple of years ago I overheard her tell her nurse, "I don't know whether she has lupus or rheumatoid arthritis or both." It's so hard for the doctors to distinguish between these diseases too.

If you do go to your doctor, be sure to be armed with a written list of any and every symptom you have or have had, in addition to a list of any and all questions you have. A good doctor, in my opinion, will listen and spend time helping you not just get a diagnosis, but understand what's going on with your body.

I'm glad you're here.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Posted 9/19/2007 11:41 AM (GMT -6)

The posts brought a tear to my eye! Lol. it feels like "OH you do understand, dont you?!"

Such an amazing feeling when it is so impossible for family and friends to grasp sometimes. I am on Plaquenil and Mobic, and only have to take a Prednisone pack when I have a flare.  The Plaquenil manages my arthritis wonderfully. I was on Methotrexate when I first started showing the signs of Arthritis because of how rapidly it was spreading.  I have really gotten most of my illness under control as far as the day to day nusciences, and I believe that once I start my CPAP machine for my apnea, my quality of life will improve immensely!

I have had a hard time coming to grips with the fact that I have to take care of my body now. I no longer drink, I exercise regularly and eat extremely healthy. Actually, besides the couple of issues I first mentioned, I am actually doing well, and much much happier just having a diagnosis of some sort. Makes me feel less crazy.

Thank you all again for your replies, they really made my day, and I look foward to chatting/posting with you all!!

 

I ffel like I am home!! lol yeah

Posted 9/19/2007 1:28 PM (GMT -6)
Crmomo--
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!
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

Posted 9/19/2007 6:13 PM (GMT -6)
Hi,

Have you been tested for allergies? I find my eyes feel a lot dryer when I'm dealing with allergies. Good luck & take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.

Posted 9/20/2007 9:32 AM (GMT -6)

Razzle,

 

I was thinking today about your post, and I constantly get clogged ear like feeling. I know that zyrtec helps, so maybe I do have some kind of allergies?

Posted 9/21/2007 10:20 PM (GMT -6)
crmomo--
I get that clogged ear feeling and my ENT told me its because of Q-tips (I hate the feeling of wet ears) and he said that using them packs the wax in. Stopping using them usually clears it up, it does for me but I still break down and use them at times. Anyway, I also got something at the healthfood store called an Ear Candle, well two, one for each ear. They are supposed to really really clear out all the wax out of your ears really really well. So I'm scared to have my bf doing it. I can just imagine him setting my hair on fire, but you might want to look into that. The guy at the health food store said he could believe how much crap came out and how well it worked compared to an ear syringe. I hope you feel better.
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

Posted 9/21/2007 10:33 PM (GMT -6)
Hi Marji . . . I have talked to several people who REALLY like the ear candling . . . I too purchased the candles, but haven't used them. I had really hoped to nail down DH and try it on HIS ears LOL!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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