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Posts (11)

Apr 26, 2013 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

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!!

Jan 19, 2012 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

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.

Aug 30, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

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. 🙂

Jul 26, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

I have not but will do so. That’s concerning…at the same time, there would be an easy remedy–never take Levaquin again 🙂 Thanks for the heads up!

Jul 26, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

Thank you, thank you, thank you!! I have ecome familiar with POTS through my own medical research. I’m taking salt myself (1 gram of pure salt twice daily) and drinking lots of water. They aren’t inclined to think POTS for me but I’m still going through testing to find out exactly what “it” is. Thanks again for your awesome support and if you have any other insights please send them my way. Take care!!

Jul 26, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

Thanks, Mariah, and yes, Addison’s was something that has been considered. I do seem to fit the bill for adrenal fatigue. However, when I was hospitalized they did the “high dose” of ACTH provocation and it wasn’t indicative of Addison’s BUT the endo. wants to do a lower dose ACTH provocation and see how I do on that. I personally don’t know the difference, but there must be…At this point just getting a definite answer would be a good thing. Sorry to hear you suffered for so long though am glad you finally did get a diagnosis.

Since my Mayo post I went off the fluorinef (per the Drs who agreed with trying this approach) and after 10-14 days I began to slowly show symptoms of an oncoming crash. On the 2nd day of the downward spiral I resumed the fluorinef and I’ve been functioning GREAT. So it definitely seems to be a problem with my body’s difficulty with fluid retention. My opthalmologist is thinking Sjogren’s though my cardio disagrees and still going through more testing with endo for Addison’s. I can’t wait to have resolution so I can move forward in my life. Thanks for your help & insights 🙂

Jul 26, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

Thanks for this info., April. Do you mind me picking your brain in regard to your fiance’s Sjogren’s?? I’m curious to know, other than the obvious dry eyes & mouth, what other symptoms does he experience? The question I’m having is about my generally chronic dehydration throughout my body. My opthalmologist does feel I meet the criteria for Sjogren’s although I just saw my cardiologist yesterday and he doesn’t seem to think that Sjogren’s would cause dehydration…It’s getting frustrating, like I’m watching a game of medical ping pong…only I’m the ping pong 🙁

Jul 26, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

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!