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Tiffini's Story

     My name is Tiffini and this is my story.  I was diagnosed with Sjogren's just a few short months ago and I have been living with it since April, 1995.  Please come take a walk with me on my quest for a diagnosis.  Along this walk you will find that I was laughed at, ridiculed, and at one point even my mental health was questioned.  I felt abandoned by family and friends many times and during those times the tears I wanted to cry just would not come out.  If you are ready, let's go for a walk.

 
    It is April, 1995, and I am awake with this incredible pain in my face and head. It is unbearable and for the first time in the 4 years I had been at my job I called in sick to work.  I made an appointment with my family doctor and saw him.  I was diagnosed with acute sinusitis and given antibiotics and decongestants that made me feel worse.  I also had a high white count and was to remain off work for the rest of the week.  During that week I moved into my first apartment and was to be on my own for the first time in my life.  What should have been an exciting happy time in my life became a nightmare that took me 4 years to wake up from.  I moved in my apartment sick as a dog.

 
     I made frequent trips to my doctor still complaining of sinus and head pain.  I recall one night being with my mom and grandma out to eat dinner and I couldn't even eat or follow simple conversation.  All I could do was focus on my head pain and fatigue because both were overwhelming me at the same time.  I left dinner.  I drove to my doctor's office and paced the examining room floor clutching my head and crying.  I was terrified.  He examined me and said it was a migraine.  Now, I had a migraine when I was 18 years old and a few thereafter and this was no ordinary migraine.  I got some Midrin and a shot of 50 mg of Demerol and 25 mg of Phenergan.  I drove home as I lived right down the street and called my mom to come stay.  At 1 am we were off to the hospital.  This was my first encounter of intimidation by the medical profession.  The triage nurse was astonished I had taken so many Tylenol, Ibuprofin, Midrin, plus the injection of the narcotics and I was still wide awake and could speak!  I was treated like a drug seeker.  I had never before in my life been to the ER  for any reason.  Prior to the first sign of something not right, I could count on one hand how many times in my life I had been sick and had always bounced back.  Heck, I had double pneumonia once before all that started and was back on my feet in a week.  This was different.  This was something attacking my body.  The ER doc did nothing.  Said nothing but tension headache and sent me home.  No labs, no CT scan, no nothing.


    Mom drove me home and we stopped frequently so I could throw up.  That night became one of many I would endure.  For not only that week but for the rest of that year I was in that condition.  I saw GP'S, Internal Medicine MD'S, Neurologists, Neurosurgeons, 3 Dentists and 1 Oral Surgeon.  I lost weight as well.  I went from 125 pounds to about 90 pounds soaking wet.  I actually went to Florida three times that year and I remember absolutely nothing except for being on the beach and the entire right side of my body went totally numb.  It was as if I had suffered a stroke and the never ending headache was worse.  I returned to my room and I remember taking some Elavil and went to sleep.  I could have gone to the ER there but chose not to.  I had spent most of that year going from doc to doc and enduring more lab tests and scans with NO answers so I felt like a lab rat at that point. I also remember nothing else during that year.  Nothing.

 
    By mid 1996 my friends and family were sick of me being sick with no validation for my complaints of chronic illness.  I was taken to a crisis stabilization unit at 2 am and there I was screened and was diagnosed with bipolar disorder.  I was injected with Thorazine and sent home with my mom with an Rx for Lithium and other meds.  I stopped believing for a brief moment that I was physically ill and thought perhaps I was suffering from mental illness.  One day after being on the Lithium my sister stopped by to check on me.  She found me clutching my head and I was literally drooling.  She rushed me to the ER.  I was crying in pain.  My head not only hurt but my scalp burned.  It felt as if I were on fire from the inside out.  A kind and compassionate MD re-examined me and it was determined I was not suffering from mental illness but something was attacking my central nervous system.  Sometimes I could feel an extremity and sometimes I could not.  I endured painful attacks of neuralgia and continued to have the scalp on fire thing.  Again no answers and yet I had normal lab results except for anemia and was told to eat better.  Again another year of pain, humiliation, and worse, no answers.

 
    In 1997 things went on like they had been until one day I realized I had clear days and foggy days.  The burning and numbness and tingling were intermittent but again the headache never went away.  By this time I began noticing patches of very dry skin and my contacts didn't feel right.  I had eye pain as well.  Later it was discovered my eye pain was from dry eyes and corneal abrasions.  I had my daughter that year as well and she was born 3 months premature.  During my 20th week of  pregnancy I suddenly went from a good pregnancy to the worst.  I had Intrauterine Growth Retardation, Preeclampsia, and developed eclamspsia.  I ate good food and did all the right things and my baby was suddenly in grave danger as was I.  I was admitted with the above complications and more.  We both pulled through however.

 
    In 1998 we focused on the possibility that nothing might ever be found as a cause for my problems.  Also many times I heard I needed to be a better mother and take care of my daughter rather than lie around all the time and complain of hurting.  By this time my neurological symptoms had worsened and the fatigue was bone crushing.  My pain was becoming more incapacitating and to make it worse I began to experience full blown panic attacks.  On Christmas Eve, 1998, we were enjoying looking out the window at the snowfall and playing with our daughter.  I laid her down for a nap and chose to spend some time on the computer.  What happened next was terrifying.  I felt a sharp burning pain in the back of my head and a feeling of over all warmth as if hot coffee was being poured in my skull and a jolt of electricity ran through me.  I tried to yell to my husband but for those few terrifying seconds I was unable to speak at all.  I stood up and my legs felt like lead weight.  The entire room was spinning.  Then as quickly as it started it was over.  I sat in the chair and sipped on a coke and began to cry and after the first few teardrops fell I dried up.  Again I chose not to go to the hospital because I knew what to expect.  A 5 hour wait, intimidating MD, and no answers.  Plus it was Christmas Eve.  I wanted to be with my family.  It is now known that what I had was a seizure.

 
    It is now 1999 and I saw a new Neurologist.  It took me two months to get in and it was well worth the wait.  He was quite concerned about my symptoms and said it could be several things.  I went in for an MRI and the report was abnormal.  It read "small remote hemorrhage in the superficial white matter".  Those words ran chills through my body.  I thought I had a brain tumor or an aneurysm but this was not the case.  In May 1999 I had my first attack of optic neuritis.  It hit my right eye and all I saw were shades of gray.  I was left with optic atrophy in both eyes as the Sjogren's has done extensive damage to my vision and optic nerves.  My Neurologist ran a lot of blood tests and again I was anemic and had a high white cell count and sinus infection.  He sent me to an Internal Medicine doctor who is now one of the finest and most compassionate people I know.  From the second he walked in and I spilled my guts to tell him everything he believed me.  For the first time in all these years I felt vindicated.  Somebody believed me.  My Neurologist is terrific but he had no answers so that is why he referred me out.  He immediately got on the ball and together we started trying to put together the pieces of this puzzle that had consumed my life.  He noticed my hands and feet and diagnosed the Raynaud's.  He noticed my mouth sores and ulcers.  He made note of my scaley dry skin and sinusitis and joint pain.  Again I was subjected to multiple lab tests but this time I felt ok about it rather than like a lab rat or pin cushion.  Someone was believing in me and trying to help me.  I was overjoyed.  He knew something was wrong, it was only a matter of finding it.  Right away he said it was most definitely auto immune and he had already had a little pow wow with my Neurologist and the auto immune disease was attacking my CNS and the rest of my body.


    In August 1999 I had a lip biopsy and it was positive for Sjogren's.  For so many years I had so many complaints and aches and pains and during those years either nobody believed me or couldn't help me or did not even attempt to help me.  I am not happy about the Sjogren's and the CNS involvement but at least I can have a name for what is wrong with me.

 
    To date I have been diagnosed with Sjogren's with CNS, fibromyalgia, TMJ, and bruxism.  I am to see a Rheumatologist soon in order to get more aggressive treatment because both my Neurologist and Internist have exhausted their means of treating me but both will remain as part of my team.  I have good days now and bad days.  My worst problems are the headache that won't quit and an overall dry feeling.  I feel like I am drying up from the inside out.  I get so dry on my legs my skin will turn red like a sunburn and feel like a sunburn as well.  I get so many sores in my mouth at times it looks like a land mine exploded in my mouth.  Due to the dry mouth my teeth are breaking off in tiny pieces and I bruise just to touch me most of the times.  The fatigue is bone crushing and there are times I am too exhausted to sleep a wink.  But I keep on going to the best of my abilities.

 
    I hope others have learned from me and to anyone out there who is suffering and not getting proper answers, my hands and my heart reach out to you as I feel your pain.  I know the humiliation and intimidation it brings.  I know how it feels to feel like nobody believes you and that you are on the inside of a bubble looking out while nothing stops.  I know the frustration.  I can only tell you to hang in there and never give up.  Someone is out there who can help.

 
    I thank you all for taking a walk with me on my journey for a diagnosis.  Not many Sjogren's patients have the CNS involvement as the primary complaint but some do as I am living proof.  Anyone can email me anytime you need to talk and need a friend.  Thanks for reading and again, email if you need to.  I will listen and I care.

Story Copyright © 2000-2007 Tiffini

Page Design Copyright © 2000-2007 Lynne Messina