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