Need help with Mystery Illness--Possible Sjogren's Syndrome??

Posted by DerbyFever @derbyfever, Jul 6, 2011

I apologize for the length but felt it necessary to give some description of what’s been going on–if anyone has ANY suggestions, I’d love to hear them and would be very grateful!!

I am a 40-yr old female and am currently a patient at Mayo (Rochester). I’m usually a high-energy, Type A, productive type although my life has been turned upside down with a mystery illness I developed around mid-March. Prior to that I’d had a sinus infections, treated with Levaquin, which didn’t seem to help. At the time I wondered whether the infection had progressed into a viral infection.

For a couple weeks I thought I was having a hard time recovering but then the symptoms progressed triggering a cascade of events unlike anything I’ve ever experienced: dizziness/disorientation (not vertigo), uncharacteristically debilitating fatigue (bedridden for days & couldn’t even go downstairs for a week), very weak, heart rate seemed to increase with any physical exertion, and what finally triggered me to see a Dr. was short-term memory problems. The memory problems were becoming more severe & frequent, and after a major incident I knew something was definitely wrong. I was also having a perpetual mental fog–difficulty concentrating and performing ALL life functions. At times it was like an altered state of consciousness & I had no concept whether minutes or hours had passed. At other times the fatigue was so severe I had trouble sitting up, holding my head up, or even keeping my eyes open.

To sum things up, here were some of the specialists I saw and their diagnostic impressions:
ENT–noticed poor coordination/balance and great difficulty walking straight line–felt it was either neurological or metabolic
Otolaryngologist–noticed nystagmus & blood pressure dropped upon standing; referred me to a cardiologist
While waiting for cardio. appt., I stumbled upon the only thing that seemed to help–I started adding salt & water to my diet and each day the dizziness subsided until it was completely gone at 10 days.
Cardiologist–gave echo, electrocardiogram, and Tilt Table Test. Told me to continue salt & water. On TTT at 11 minutes (< nitro) my systolic blood pressure dropped to 43 (baseline of 130) and my heart rate was 58. The test was immediately stopped and I was given IV saline. Diagnosis of neurocardiogenic syncope (aka vasovagal syncope, aka neurally mediated syncope). Dr. prescribed me midodrine but had poor response, tried raising and lowering dose over next few weeks but unsuccessful. Began suspecting adrenal dysfunction or Addison’s Disease, put me on Florinef. Not sure if this helped as I developed another sinus infection (again treated w/Levaquin & again seemed ineffective & possible progression into virus?)

In the process of all this my husband took me to the ER 3 times (4/1, 5/20, & 6/9–I was admitted for 2 nights on 6/9). In retrospect now, each time the IV saline solution helped although symptoms (in one form or another) returned, presumably when the saline left my body. On 5/29 horrible piercing back pain set in and while I was in the hospital 6/9 I was diagnosed with C-Diff. This of course depleted my body further of fluid although I got a steady dose of IV saline during my inpatient stay. Despite being discharged w/C-Diff, I felt better than I had in months & cleaned the house, enjoyed doing laundry, etc. It was then I started putting together that administration of IV fluid seemed to bring great improvement (the more the better) until it tapered off. 5 days after my discharge, I could almost “feel” the effects of the fluid leaving my body setting in (not sure if it’s dehydration or what??) and–determined not to plunge into the depths of the horrible symptoms again, I began consuming lots of Pedialyte. This–along with the Florinef (I think) helped.

While hospitalized the ACTH provocation test was administered to me although did not indicate Addison’s. The caveat, however, is the tech who drew my blood was too “busy” to make the draws at the proper times. The 30 minute was drawn at 43 minutes, the 60 minute was drawn at 75 minutes. My aldosterone was very low (1) but cortisol increased appropriately (albeit barely making the gains required).

My Drs at home have hypothesized everything from partial complex seizures to cervical spine d/o. I put all my hopes in the Mighty Mayo Clinic pinpointing my problem but after being here 10 days, I’m no further along in finding answers. In fact, I’m more frustrated at this point than when I arrived here. I’ve seen a Mayo cardiologist (who repeated the echo & electrocardiogram as well as a 24-hour Halter) who is emphatic that I do NOT have neurocardiogenic syncope and must be released from the “clutches” of a cardiologist. However, other than saying a cardiologist cannot help me, he had little other suggestion or help to offer me.

Here at Mayo I saw a neurologist (which I requested before coming here) who is similarly emphatic that there is nothing neurologically that can explain my symptoms. She had me go through the Autonomic Reflex Screen yesterday; I had no further appts. with her but pleaded with her nurse to call me with the results. The test showed suppression of postganglionic response although the Dr. suspects this was caused by taking Tylenol PM the night before and recommends retaking the test when I’m T-PM free for 3 days.

Meanwhile we thought we had a *breakthrough* when a Dr. from back home called to give me the results of an overnight oximetry test I’d taken pre-Mayo. My O2 levels were normal although I had an avg. of 15.5 episodes of sleep apnea per hour (over 6 hours, with a max. of 35 in hour 4). My Dr. at home recommended an overnight sleep study so I’ve been doing everything to try to get this done while we’re here at Mayo. I was fortunate enough to be called on a wait list (called a “checker” here at Mayo) yesterday to see a Dr. in the sleep d/o dept. for a consult. He looked at the results, talked to me for a bit, and assured me he is certain that I do not have sleep apnea. He showed me that my O2 levels did not fluctuate during the oximetry test and was not impressed at all with the test showing my episodes of sleep apnea. He pretty much discounted those results altogether since it was from a home health clinic (his words not mine), there was no explanation of the results on the forms, and the description of the test itself was vague. From that he concluded it to be invalid & did not recommend a sleep study.

So now I’m in no man’s land as far as understanding what in the world is going on inside my body. A couple Drs. here have suggested post-viral fatigue syndrome and have referred me to the fibromyalgia clinic (where I’m spending my days as a checker since the 1st appt isn’t for several weeks). The one common thread that seems to persist, however, is FLUID. I feel that surely that must mean something to someone…I had to stop the Florinef a couple of weeks ago prior to coming to Mayo (I’ve also stopped the salt tablets). Although I wasn’t convinced it was helping, I am now that I’ve started to to regress since I’ve discontinued it. From my own research on what conditions can cause chronic dehydration, Sjogren’s Syndrome seems to keep coming up.

Is anyone familiar with this? If so, what kind of specialist would I need to see? A rheumatologist? Opthalmologist? I didn’t think my severely dry eyes had anything to do with the current symptoms but I’m now wondering. I’ve had severely dry eyes my entire life and have been using Rx Restasis for several years. (I had LASIK in 2001 and the Drs. told me my eyes were so severely dry I should actually reconsider having the surgery.) I also have severely dry throat & am hoarse a lot (I don’t smoke or drink) and have to drink continuously water during meetings at work just to continue making presentations. This disorder seems to be elusive for any Drs. that I’ve seen thus far.

Thanks so much for taking the time to read this and if you have any ideas, I’d love to hear them.

DerbyFever

Thanks a ton for everyone’s help, input, and interest. I rec’d a message asking for an update and I realized I’ve been remiss in not posting the latest–sorry! Here’s the latest…as I stated in my last post, I had discontinued the Fluorinef and had to resume it, and I felt much better after restarting it for the 2nd time…Since then I’ve become stronger and felt well enough to attempt to stop the Fluorinef again. I’m ELATED to say it’s been 4 weeks and I’m Fluorinef free and so far so good!! I think the magic piece of the puzzle has been my morning “cocktail” I’ve discovered–1 tsp. of salt diluted in a glass of water. Not especially pleasant but it seems to be very effective. This is followed up with 2 additional salt tablets during the day (1 mg. each). I just saw my family Dr. last week and she said my blood pressure is strikingly low for all that salt consumption (110/80). This indicated to her that without the extra salt my bp would likely be too low thus reinforcing the idea of neurocardiogenic syncope in her opinion…She further added that if I have 2 bad days in a row then I really need to get back on the Fluorinef, assuring me with a high degree of certainty that there is nothing more sinister going on since I’ve been tested for everything at this point…

Other things I’ve learned include that I do indeed have mild sleep apnea following an overnight sleep study (even though I don’t fit the “typical” profile for a sleep apnea patient) due to chronic obstruction, which is presumed to be allergy-related. The Dr. was going to recommend that I see an ENT but after she learned of our intended move to a more allergy-friendly environment, she felt this alone would remedy the sleep apnea problem.

As for Sjogren’s, I did see a rheumatologist who did blood testing for Sjogren’s and, although I know the test isn’t 100% accurate, there was no indication of Sjogren’s, lupus, or rheumatoid arthritis. That’s good news; however, the BIG question lingers, why in the heck did my body fall apart from March through July and how do I prevent this from happening again??

My family Dr. also offered her 2 cents on this subject. She described eloquently (which I cannot do justice) that people with allergies sometimes contract a virus and the combination of the 2 in the body can cause all sorts of unpredictable reactions in the body. She described at least 2 other examples of patients she cares for who developed orthostatic hypotension/neurocardiogenic syncope following contraction of a virus, which both resulted in low blood pressure and the need to take meds. to increase bp & beef up the blood volume. She told me that the salt is essentially doing what the Fluorinef would be, hence the need to resume the med. if I find the salt is no longer doing the job. She is unable to determine whether this will be a life-long condition or not, but did believe the possibility exists that I will “outgrow” it (even though I’m 40 🙂 Regardless, she did feel more or less that I should be out of the woods with the acute phase of the condition, and I should be relatively stable now that I have a steady regimen that seems to be working (salt, vitamins, etc.)

I have days in which I feel tired but NOTHING like the debilitating fatigue of months past. What I feel now is normal fatigue after a long day, not the inability to hold my head up or keep my eyes open like before. I haven’t had ANY dizziness or severe weakness. I haven’t had the opportunity to get back to the specialist to have the follow-up testing completed for Addison’s and, quite frankly, I’m not sure that it’s even necessary at this point…However, it’s still in the mix of possible diagnoses and something that has neither been completely ruled in or ruled out. I am still pondering on whether to take off work and have the testing done.

I have been faithfully doing the exercises for fibromyalgia I learned at Mayo, and I have to say I’m pleasantly surprised that they really do seem to help with the general aches & pains. So I can either interpret this as my having fibro. on top of the other stuff hence the exercises are helping or the exercises are beneficial for many conditions, not just fibro., and they’re simply benefiting me regardless of the underlying problem(s). Either way, I’m happy with the results and intend to continue them–it’s primarily stretching each major muscle group, and I can tell a difference when I wake up in the morning if I skipped doing them the night before.

One last random thing, I recently had plugs put back into my eyes (I had another set about 10 years ago) in order to stop the moisture from draining off my eyes and it has helped immensely. I’ve been on Restasis for years but it hasn’t completely taken care of my dry eyes. I have to say that the plugs in conjunction with the Restasis has helped a ton. The eye Dr. could tell a measurable and observable improvement on both eyes a month after putting the plugs in the tear ducts.

Thanks again to everyone for the comments and input, and I hope this update will help others who may be suffering from similar issues. I don’t feel like the mystery of my condition will ever be solved, but if I can consistently be back to my normal life, that’s enough for me–that’s like a dream come true compared to the ordeal of the last few months. 🙂

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@glutenfreegloria

Have you ever researched the short and long term possible side affects of Levaquin? Sounds like your problems started after taking it and are very similar to comments on the web. Good Luck

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My brother, age 65, experienced an almost identical mystery illness three years ago. He strongly believes that his similar and acute mystery illness (extreme emotional and cognitive dysfunction, being-in-a-cloud, etc) was caused by his reaction to taking Levaquin. He has done some research, and his lay theory is that his liver could not metabolize the Levaquin properly. His system was essentially overwhelmed. Most doctors prescribe this anti-biotic because it in fact does help people with infectious diseases.

However there is a segment of the population which is intolerant of this medication… Unfortunately genetic testing protocols are not available to help assist doctors select the appropriate antibiotic for the individual patient. The routine prescription protocol seems to be to prescribe various anti-biotics in increasing order of power: amoxycilin, Doxicyclin, and then maybe Levaquin. I figure that my genetics are similar to my brother’s, and I have told my doctor to please avoid this fluroquinoline class of anti-biotics when I need an anti-biotic. Maybe only in a case of life or death will I allow Levaquin or similar to be used.

My brother is now better. He attributes his recovery to a regimen of alternative vitamin therapies. I Hope this helps.

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@glutenfreegloria

Have you ever researched the short and long term possible side affects of Levaquin? Sounds like your problems started after taking it and are very similar to comments on the web. Good Luck

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Thank you for this information, seelindsay, and I’m so happy to hear that your brother has experienced a full recovery. Does he ever experience relapses, even minor ones? I’m asking because, even though I’m much better now, I’ve experienced a couple of smallish relapses recently when I’ve come down with infections (though have NOT taken Levaquin). It’s perplexing to me the marveling advances we’ve witnessed as a society yet we still cannot figure out “mystery illnesses” such as these nor the genetic testing protocols that you mention. Although I’m not an MD, I do see a big future for genetic screenings although unfortunately this is likely not pursued because it’s not where the big $$ is. You are wise for avoiding this class of antibiotics in my opinion, and your brother’s theory is fascinating. Thanks again for the info. and I’m glad to hear of your brother’s progress.

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Have you had your pituitary and adrenal functions checked? if not please Bavarian check your endocrine system. You sound a lot like what I have. I was also diagnosed with neurocardiogenic syncope, but I have secondary adrenal insufficiency also, and that can cause a lot of the symptoms you mentioned as well. If your heart rate is increasing 30+ beats or over 120 then you may have POTS syndrome. Either way I wish you luck and I hope they figure it out. If it is adrenal insufficiency then that is life threatening so make sure you rule that out.

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Hi! wow, I think I know how you feel. first off the C-deff. will definelty dehidrite you to a raisin. and will make you very weak. lets see let me give you some of my history, maybe it might help. Okay when I was 29 I had surgery on my elbow to move my unlar nerve . the reason to have this done was my hand was numb at I lost strengh in it ( it was atropying) meaning I was losing my muscle . so I had tests done to see what was going on and I guess it was my unlar nerve being pinched in my elbow. So I had surgery 2 days latter I remember feeling like, ache all over and very week. then my left eye at first It kinda felt like a pulled muscle in my eye, i went to my eye doctor cause it was getting way worse in no time it felt like myb eye was on fire from the inside out. nobody knew what it was I went to 30 different doctors and 2 hosipitals . well it ended up being shingles. they had me on so many drugs I actually lost my mind it was really scary place to be. I didnt know my name , where I was or even

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@glutenfreegloria

Have you ever researched the short and long term possible side affects of Levaquin? Sounds like your problems started after taking it and are very similar to comments on the web. Good Luck

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Hi DerbyFever. I just returned to Mayo Online, and missed your post in January. Glad to hear that you are better, and I hope you are staying well. I am not aware of any relapses in my brother’s mental health since he began his regimen of alternative vitamins. He continues to do well. Thanks for asking, and again I hope you are doing well, and thanks for sharing your journey on this forum.

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@cclong

Have you been tested for SLE?? I have experienced similar symptoms in the past when flaring as I have SLE, Sjogrens, and Antiphospholipid so I am unsure as to which disease was contributing to the symptoms. As far as which specialist to see for Sjogrens I see a rheumatologist but, as I said I also have SLE which is in the rhuematology field of study. I hope they can figure out what is going on and if you have not been tested for lupus/SLE I would certainly have that done ASAP as it can cause all of the symptoms you have described and when under control you will never feel 100% but, it is very tolerable.

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If you have issues with dehydration and elevated liver enzymes you should be tested for celiac disease. The dehydration was a problem for 3 family members (in my family) and one was even tested and diagnosed with diabetes insipidus. No stomach problems at all, no weight loss- we are all tall and in fact slightly overweight. Another family member (my brother) did not have issues with staying hydrated but he had the elevated liver enzymes. Then one (my son) was diagnosed with the celiac (screened for it due to acquiring another condition often associated with celiac). This led to the rest of us being diagnosed either celiac or gluten sensitive (you know you are gluten sensitive if you go off gluten strictly and feel great improvement and subsequently have a violent stomach reaction to gluten). Anyway I have yet to meet a doctor who associates the dehydration with celiac but I know many patients for whom such problems cleared off the gluten. The elevated liver enzymes are known to be associated and if you do have celiac then going gluten free should help that too. Get tested. Don’t go gluten free until you get tested or you will regret it! I was violently ill on the gluten challenge which was needed because I went gf without being tested first. Good luck.

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@cclong

Have you been tested for SLE?? I have experienced similar symptoms in the past when flaring as I have SLE, Sjogrens, and Antiphospholipid so I am unsure as to which disease was contributing to the symptoms. As far as which specialist to see for Sjogrens I see a rheumatologist but, as I said I also have SLE which is in the rhuematology field of study. I hope they can figure out what is going on and if you have not been tested for lupus/SLE I would certainly have that done ASAP as it can cause all of the symptoms you have described and when under control you will never feel 100% but, it is very tolerable.

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That is so strange that you should mention Celiac Disease…In a strange twist, our son was suspected of having CD last year so the entire family went gluten free. We stayed off gluten until around Dec.2012, at which time we re-introduced it for a couple of months and, as you said, I became violently ill. Our son became a different child on gluten and the effects were intense and dramatic. When we finally connected the dots (hindsight being 20/20, of course) with the gluten, we went off for the 2nd time. We both experienced HUGE symptom improvement within a few days, which was shocking to me as I thought surely it would take several weeks to see the difference as the 1/2 life of gluten is several months…We’d never suspected ME of having Celiac but now I’ve wondered…I’ve considered having the formal test, however, I’m already un-insurable (my COBRA expires next month) and we didn’t want any additional red flags. At least not until 2014 when the insurance overhaul takes place. I realize it’s probably safe to move forward right now, but since the only treatment for CD is going gluten free anyway, I’m going to postpone for the time being. I’m not ready to do the gluten challenge again just yet, I dread that day…Thanks for the tip and it’s surprising we arrived at the same place although through the back door. Sharp insight and thanks for sharing!!

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@cclong

Have you been tested for SLE?? I have experienced similar symptoms in the past when flaring as I have SLE, Sjogrens, and Antiphospholipid so I am unsure as to which disease was contributing to the symptoms. As far as which specialist to see for Sjogrens I see a rheumatologist but, as I said I also have SLE which is in the rhuematology field of study. I hope they can figure out what is going on and if you have not been tested for lupus/SLE I would certainly have that done ASAP as it can cause all of the symptoms you have described and when under control you will never feel 100% but, it is very tolerable.

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To be honest, the gluten challenge under circumstances you describe (becoming violently ill- which is also what I experienced when reintroducing it) is not something I would care to do again, insurance or no insurance! I think you have your answer – just make sure you take a high quality gluten free multivitamin and if possible talk to a nutritionist who knows the pitfalls of the gf diet – or at least read about it. One of the problems I had (possibly as a result of the gf challenge i did) was I became even more sensitive to gluten – meaning whereas previously I could eat corn tortillas heated on a griddle where wheat tortillas had been cooked previously – after the gf challenge doing this would give me symptoms of having been glutened. Word of warning – for some of us, the reaction to small amounts of gluten gets stronger the longer we are off the gluten. In ways I regret doing the challenge at all, and there is no way I would ever do it again. So maybe you are lucky the challenge is not a possibility right now. Thanks for writing back. I hope all goes well for you and your family!

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@cclong

Have you been tested for SLE?? I have experienced similar symptoms in the past when flaring as I have SLE, Sjogrens, and Antiphospholipid so I am unsure as to which disease was contributing to the symptoms. As far as which specialist to see for Sjogrens I see a rheumatologist but, as I said I also have SLE which is in the rhuematology field of study. I hope they can figure out what is going on and if you have not been tested for lupus/SLE I would certainly have that done ASAP as it can cause all of the symptoms you have described and when under control you will never feel 100% but, it is very tolerable.

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I find your post very interesting with some similar themes to health issues I’ve struggled with. There may be no connection, but I wonder if simple vitamin deficiencies have caused some of your symptoms. I was diagnosed with rheumatoid arthritis 40 years ago, migraines 30 years ago, and c diff just two years ago. I have struggled with high cholesterol and at the age of 40 developed FOOD allergies! Over the past two years I have become a probiotic evangelist, believing they are the secret solution to many of the worlds health problems! I have recently been feeling extreme fatigue (similar to the way I felt just before getting sick with c diff) and have also started having migraines again (for which I am no longer on medication and have been gone for years). After running some tests, my doctor discovered that I have a deficient level of vitamin D (at 13) and an insufficient level of B12 (at 270). I am currently taking a prescription dose of D along with a B50 complex and additional B12. The migraines are gone and fatigue is getting better. You will find interesting research by Dr. Holick online supporting the vitamin D deficiencies causing many health issues. Additionally, I found Dr. Gominak’s work to be fascinating. She explains how, with the proper levels of D and B vitamins, our bodies supply sufficient gut flora. In any case, I’ve read there could be a connection between vitamin D levels and sjogren’s symptoms you describe. Wouldn’t it be wonderful if it all turned out to be solved with vitamins! I wish you the best of luck!

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I hope you are feeling better since posting this :-).

If these health issues haven’t resolved, however, I recommend ruling out UAR Syndrome. Expert interviews from Stanford and Columbia University researchers are available on Dr. Park’s site: http://www.DoctorStevenPark.com. Best wishes in your pursuit of good health!

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@derbyfever

Thank you, LaNita, I appreciate the words of encouragement! I just completed a sleep study and the good news is all looks normal in that regard in my case. I saw my opthamalogist on Friday and he did feel like my condition fits Sjogren’s and has referred me to a rheumatologist (who I will see in August). I’ve been using Restasis eyedrops for years and just had my 2nd set of tear duct plugs implanted. It is exactly as you said–like sand in my eyes–just calling it “dry eyes” doesn’t really convey what it feels like. At times the only relief is to simply close my eyes otherwise the burning & sandpaper feeling is too much.

Another wrench in the whole matter…I saw my cardiologist yesterday and he does NOT feel it’s Sjogren’s. Ugh!! He agrees that the central concern seems to be my body’s inability to hold on to the fluid. Since my post, I’ve gone off the fluorinef but had to resume it since my symptoms of fatigue & generally just being “out of it” began to take hold again. I think this time I started the fluorinef early enough to start the really bad downward spiral from taking over. The ? is what would cause my body to chronically lose fluid? My cardio. doesn’t seem to think Sjogren’s would do that…Any thoughts on this since you’ve been living with Sjogren’s and FM? Thanks for your help & encouragement!

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Don’t believe him. My cardiologist did the same thing to me. It kept me in the dark a year longer.

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@jennifer2010

Don’t believe him. My cardiologist did the same thing to me. It kept me in the dark a year longer.

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Hi, @jennifer2010 – will you share more about what you were experiencing when you consulted the cardiologist and what happened?

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Hopefully they ran a full ENA Panel. My ANA was over negative. But my SSb-La was positive. Which is rarer but my Dr seems to think i have sjrogens as well. I went thru a 4 month flare up along with anaphylactic shock. Im still not sure what the answers are. If you are covered for it. I wpuld ask your Dr for an epi pen and keep one handy. I had to use one twice and never thought i would. Idiopathic. Tbey never found the source. I had woken up like that no food and or drink involvement. Ive been to allergist. I have mild allergies. But i experienced ucataria for 6 months. Chronic hives, eyes swelling shut etc. I wish you the very best

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I know your story was in 2011, it is march 28th 2018 and i am just reading this. Your story sounds so familiar is scary. Ibhave seen as many drs as you have over a course of 5 years.. i have chronic dehydration that they cannot detemine why.. i was dx with rheumatoid arthritis and saw my rheumy yesterday.. she thinks i have sjogren's disease.. i have the dry eyes ect.. i live on pedilyte and smart water … its expensive. I am so tired of it. I just wanted to tell you that because of your long story and all your fabulous details i k ow i am not craxy and maybe finally have an answer..thank you so much.. i hope you have answers too .

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