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DerbyFever
@derbyfever

Posts: 11
Joined: Jul 06, 2011

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

Posted by @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






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CCLong
@cclong

Posts: 1
Joined: Jul 06, 2011
Posted by @cclong, Jul 6, 2011

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.


LaNita Wynn Young
@lanitawynnyoung

Posts: 7
Joined: Jul 16, 2011
Posted by @lanitawynnyoung, Jul 19, 2011

I am also sorry you have had to go through all those things! I, too, have had a somewhat similar experience over the last 10 years. I was diagnosed with Fibromyalgia in 1998 by a very good Rheumatologist and have been treated for that til present and ongoing. Recently though, I saw another very good Rheumatologist and was diagnosed with Sjogren’s Syndrome. He said I did not have SLE, but the chronic dry eyes (they feel like sand in my eyes) and chronic dry mouth and many other symptomes were indicative of Sjogren’s. He put me on Plaquinil (generic form) and after about 4 months I feel some better, but not where I want to be. I have both Central and Chronic Obstructive Sleep Apnea and that causes me more problems than anything. I have had several sleep studies and I cannot sleep without a BiPAP machine without paying consequences. I hope you find out what is wrong, I know you are tired, but keep up hope and never give up, that is what keeps us going. I too have the chroinic fatigue and it is worse than all the other. Just keep doing what your heart and body tells you and get to the right doctor by process of elimenation! God bless you in your quest ot find the answers! And, oh, also, with Sjogren’s you see a Rheumatologist, and have to keep regular appointments with a dentist and opthamologist for treatment of the dry eye and tooth decay. I hope some of this may have answered your questions or given you encouragment.

Liked by jodyalbright


jodyalbright
@jodyalbright

Posts: 32
Joined: Jul 06, 2011
Posted by @jodyalbright, Jul 21, 2011

can either sjorgrens or addisons disease cause elevated liver enzymes….


DerbyFever
@derbyfever

Posts: 11
Joined: Jul 06, 2011
Posted by @derbyfever, Jul 26, 2011

I have not been tested for SLE but have an appt. in August with a rheumatologist so will inquire about it. Another Dr. mentioned SLE/lupus as well so it sounds like I definitely need to follow up in that area. Thanks for the info. Out of curiosity, does Sjogren’s cause dehydration in your case??


DerbyFever
@derbyfever

Posts: 11
Joined: Jul 06, 2011
Posted by @derbyfever, Jul 26, 2011

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!


hannah31
@hannah31

Posts: 3
Joined: Apr 26, 2013
Posted by @hannah31, Apr 26, 2013

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.


DerbyFever
@derbyfever

Posts: 11
Joined: Jul 06, 2011
Posted by @derbyfever, Apr 26, 2013

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!!


hannah31
@hannah31

Posts: 3
Joined: Apr 26, 2013
Posted by @hannah31, Apr 26, 2013

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!


Melanie J.
@melaniej

Posts: 1
Joined: Apr 30, 2013
Posted by @melaniej, Apr 30, 2013

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!


glutenfreegloria
@glutenfreegloria

Posts: 5
Joined: Jul 12, 2011
Posted by @glutenfreegloria, Jul 12, 2011

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


DerbyFever
@derbyfever

Posts: 11
Joined: Jul 06, 2011
Posted by @derbyfever, Jul 26, 2011

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!


seelindsay
@seelindsay

Posts: 3
Joined: Jan 08, 2012
Posted by @seelindsay, Jan 8, 2012

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.


DerbyFever
@derbyfever

Posts: 11
Joined: Jul 06, 2011
Posted by @derbyfever, Jan 19, 2012

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.


seelindsay
@seelindsay

Posts: 3
Joined: Jan 08, 2012
Posted by @seelindsay, May 11, 2012

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.


Krista
@krista

Posts: 2
Joined: Jul 13, 2011
Posted by @krista, Jul 13, 2011

I’m so sorry you’re going through all this! Please contact me at any time for support. I understand how frustrating it is to have a chronic illness and to search for an accurate diagnosis and treatment. I have Postural Orthostatic Tachycardia Syndrome which is caused by a problem with my autonomic nervous system. I was tested and treated in June at the Mayo Clinic in Rochester (my POTS team consisted of Nurse Practitioner Carter in Women’s Cardiology, Dr Osborn in Cardiovascular Electrophysiology, and Dr Fealey in Autonomic Neurology). I also have a problem retaining fluids, and I was prescribed Florinef. My autonomic problem causes my body to not retain the fluids I consume so I have to take extra sodium. The side effects of Florinef were pretty bad, so I don’t take it, and instead I consume 3-4 grams of sodium per day in addition to 2-3 liters of fluid per day. Per the Mayo Clinic team, the best way to get sodium in the diet is by pickles and V-8 juice. They’re full of sodium and it works great.

I also have episodic extreme fatigue, and it’s caused by cerebral hypoperfusion, which is caused by my POTS. My fatigue gets better when I am well hydrated, have a good amount of sodium in my body, and I wear compression garments.

My condition causes a lack of vaso-constriction, so my blood pools in my arms and legs instead of going to my head and brain, so I need the fluids and salt and compression garments to help with vaso-constriction.

I’m not sure if you have POTS, but they have a great POTS clinic at the Mayo Clinic. I’ll keep you in my prayers, and please know that you’re not alone in your quest for answers.

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