which one I have? Well, I do have Raynaud's Syndrome but symptoms of Sjogrens Syndrome. The dry mouth and eyes with painful stomach aches. Symptoms of Lupus and MS. What are they waiting for? I spent seven years with symptoms such as a strange gait, blurred vision, seizures, low blood sugar, loss of muscle tone pain in all of my body, extreme fatigue and forgetfullness. I had my gall bladder removed and all the symptoms disappeared. I have not had any of these for two years now. They are probably waiting to see how your symptoms develop to indicate which autoimmune disease is more likely. I'm sure your anxious, so here are a few things you might want to ask about (though you may have covered them already).
You have probably been tested for ANA, antinuclear antibodies. This test is positive in about 90% of lupus patients, and also high numbers of other autoimmune sufferers. If you are positive, then the pattern of the ANA (e.g., speckled, diffuse) can tell the doctors more about which conditions are likely.
Another thing to consider is an MRI of your brain, if you haven't already received one. A diagnosis of Multiple Sclerosis requires visual confirmation of 2 lesions on the brain. A complication of lupus, CNS vasculitis, can also cause similar lesions, but is much less common and particularly unlikely at this stage given your specific symptoms. Therefore, an MRI could be extremely helpful. Another test that can be helpful in ruling out MS is a spinal tap.
I'm not qualified to say this, but I can't help noticing that your symptoms are highly indicative of lupus, and not really of MS. You do not mention any of the tell-tale signs of MS-- involvement of the vision; paresthesias; headaches; tightness in the chest, etc. Neither Raynaud's nor Sjogren's is commonly assosciated with MS, while they are classic indicators of lupus, especially appearing together. However, be sure also that your doctors do not miss the possibility of other autoimmune conditions with less cache', such as Mixed Connective Tissue Disorder. here are links to sjogrens syndrome that I found for someone else. Sjogens is linked to Hashimoto's thyroiditis (another autoimmune disease) so I will give the links to info on that too...
Sjogren's syndrome
http://www.rarediseases.org/search/rdbde... (NORD鈥croll down for support organizations)
http://www.clinicaltrials.gov/ct/search?...
(clinical trials)
http://www.medifocushealth.com/RH011/sjo... (sjogren鈥檚 guidebook)
http://autoimmune.pathology.jhmi.edu/dis... (John Hopkins鈥ashimoto鈥檚 thyroiditis linked to sjogen鈥檚 syndrome)
since the last link shows a relationship between Hashimoto鈥檚 thyroiditis and sjogren鈥檚鈥ere are links to hashimoto鈥檚 thyroiditis鈥?br>
Hashimoto鈥檚 thyroiditis
http://www.clinicaltrials.gov/ct/search?...
(clinical trials...one with selenium..one with hep c relationship to hashimoto's, one with postpartum link)
http://en.wikipedia.org/wiki/Hashimoto's... (wikipedia)
http://www.nlm.nih.gov/medlineplus/ency/... (medline plus)
http://autoimmune.pathology.jhmi.edu/dis... (John Hopkins鈥inked to sjogen鈥檚 syndrome)
http://www.rarediseases.org/search/rdbde... (NORD..hypothyroidism鈥croll down for related organizations)
http://www.hormone.org/public/thyroid/hy... (the hormone foundation)
http://www.thyroid-info.com/hashimotos-e... (Hashimoto鈥檚 encephalopathy鈥are)
http://www.thyroid-info.com/articles/yer... (hashimoto鈥檚 and food borne infection,Yersinia enterocolitica infection, via contaminated meats -- especially raw or undercooked products -- poultry, unpasteurized milk and dairy products, seafood -- and particularly oysters -- from sewage-contaminated waters and produce fertilized with raw manure. Foods can also be contaminated by food handlers who have not effectively washed their hands before handling food or utensils used to prepare food. Improper storage can also contribute to contamination.>> stool test that can detect yersinia enterocolitica )
http://www.thyroid-info.com/articles/coh... (hashimoto鈥檚 and anergic depression)
http://thyroid.about.com/cs/hypothyroidi... (hashimoto鈥檚 vs hypothyroidism..what is the difference鈥?In the study of 21 patients with euthyroid Hashimoto's Thyroiditis (normal range TSH, but elevated antibodies), half of the patients were treated with levothyroxine for a year, the other half were not treated. After 1 year of therapy with levothyroxine, the antibody levels and lymphocytes (evidence of inflammation) decreased significantly only in the group receiving the medication. Among the untreated group, the antibody levels rose or remained the same.
The researchers concluded that preventative treatment of normal TSH range patients with Hashimoto's disease reduced the various markers of autoimmune thyroiditis, and speculated that that such treatment might even be able to stop the progression of Hashimoto's disease, or perhaps even prevent development of the hypothyroidism. )
http://thyroid.about.com/cs/hypothyroidi... (page 2鈥elenium might help鈥nd calcium with magnesium supplements for nighttime problems)
http://thyroid.about.com/cs/hashimotos/a... (hashimoto鈥檚 encephalopathy)
http://thyroid.about.com/od/hypothyroidi... (treating antibodies when TSH is normal)
http://thyroid.about.com/blcohen.htm (treating anergic depression)
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3 books on disease symptoms and treatments
you could also get these books on ebay or amazon or a half price book store. (last two are very similar)..
1.Oxford Handbook of Clinical Medicine
2.Handbook of Diseases (Lippencott)
3.Professional Guide to Diseases (Springhouse)
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Lupus
http://www.clinicaltrials.gov/ct/search?... (clinical trials, page 1)
http://www.clinicaltrials.gov/ct/action/... (clinical trials , page 2)
http://www.lupus.org/webmodules/webartic... (clinical trials of a novel therapeutic)
http://www.lupus.org/webmodules/webartic... (clinical studies of lupus)
http://www.lupus.org/webmodules/webartic... (find local resources)
http://www.lupus.org/webmodules/webartic... (patient and caregiver resources for meds)
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Multiple Sclerosis links
http://www.nmss.org/ (National Multiple Sclerosis Society)
http://www.clinicaltrials.gov/ct/search;... (clinical trials for MS鈥lick on map for local trials鈥on鈥檛 forget to turn pages to see all trials)
http://www.nlm.nih.gov/medlineplus/multi... (MS on medline plus)
http://www.nlm.nih.gov/medlineplus/ency/... (MS on medline plus ..encyclopedia)
http://www.ninds.nih.gov/disorders/multi... (MS at National Institute of Neurological Disorders and Stroke)
http://en.wikipedia.org/wiki/Multiple_sc... (MS on Wikipedia)
http://www.medicinenet.com/multiple_scle... (MS on medicinenet)
http://www.mayoclinic.com/health/multipl... (MS on mayo clinic)
http://www.webmd.com/diseases_and_condit... (MS on webMD) This is just a guess, but, they may be looking at the autoimmune disease that I have been diagnosed for. It is still listed as rare, but I know that it is not. It is just misunderstood. The name is Antiphospholipid Syndrome. Lupus patients can have it or it can be a primary disease, without Lupus. It also mimics MS. I am including a link that explains this disease. in a simple way |
