How it all began

I was born in 1967 in Newark NJ.   My father was in the beauty business and came from the family of a laundry truck driver from Russia.  My mother was an office manager and came from the family of a cab driver.  I have one brother who is 5 years older than me.   My father was commissioned in the 70's to open a chain of retail stores and we were moved to New Orleans where i spent about 15 years.  My father had a beauty background, went to school and got a barber license combined with some basic retail experience.   It was a great life.   Living in new orleans was wonderful.  So much culture,  so laid back, and so much to do as a child.   I had the perfect childhood.   Playing outside with my friends, swimming, fishing, and school was a huge focus.    My parents were able to send me to a private school in new orleans that actually prepared me for college once i hit the 9th and 10th grade.   My health was perfect, i was a little overweight as a kid, but probably from eating all that good food they had there.  But i never had any health problems.   In fact,  i remember seeing a pediatrician until I could barely sit in the seats at his office.   

In 1982,   My father announced to us that we were going to move to Dallas, Texas because his company was expanding and the new headquarters were going to be located in Denton Texas.   We were moving to Carrollton, Texas which at the time was relatively undeveloped.   At the time we were going to move, my brother just entered college at LSU.   My goal was to finish up highschool and also attend LSU as well to study business.  My father was not the healthiest person around, he was heavy, had diabetes and promised to seek some help when we moved to Dallas.   He even had an appointment set up to see a specialist.   We moved here on Aug 3, 1982.   The morning of August 6 1982,  I awoke to my mothers screams for help from downstairs while i slept.   I ran downstairs to find my father slumped over on the ridge of the bathtub.   Only 3 days after moving to Dallas,  My father was dead of a heart attack.

In sheer panic, my mother put the house back up for sale to try to move back to New Orleans.  Unfortuntely,  no one wanted to move to Carrollton,  Texas at the time.  So after a year of trying to sell the house, my mother finally took the sign down and we decided to stay here.    I enrolled in Public school,  went to WT WHITE highschool.   Started in the 10th grade and quickly i learned that the private school already had already prepared me far beyond my expectations for what to expect in highschool.  In the 10th grade I was already taking Senior level courses and was told that by the 11th grade I would of completed most of the requires courses for highschool and that I should consider getting into the work program.    I took a job at Bloomingdales when they came to Dallas at Valley view Mall.    I opened the store.    I was an associate in the boys department but quickly moved up in the store.  First boys, then the Mens department and next thing you know I was working the Human Resource department.    I decided that retail was going to be my passion.   Bloomingdales agreed to pay part of my college tuition if i stayed here in Dallas and worked for them while maintaining a B average in my courses.   At the time my mother was still heartbroken over my fathers passing and I decided the best course of action would be to stay here instead of going to LSU and try to work my way through college.   I enrolled in the Art Institute of Dallas to study fashion, keeping my job at Bloomingdales.    By the time i was about to graduate from college,  I was writing training manuals for Bloomingdales and they wanted to move me to NY to work for corporate HR.  However, there was just not enough money involved and I couldnt leave my mother.  Then Bloomingdales announced they were closing their doors in Dallas and I decided to take a job working at Neiman Marcus.

Worked at Neiman Marcus starting off as a manager in the Christmas shop and moving my qay up over the years to Merchandise coordinator, Manager, and finally got accepted into the Executive development program.   Moved out of my house, got an apartment and was ready to take on the world.   Worked at Neimans for a while at the same time developing a small mail order company that kept growing and and growing selling music related items such as Tshirts, posters, stickers, cassette tapes etc.   Eventually ended up with a full time company along with several employees, a part time accountant and was set up as a LLC.   I ended up leaving Neiman Marcus and taking on the music company full time.      Did the mail order company for several years, was a pioneer in the music insustry.  Wrote several articles regarding online business, spoke in front of congress and the effects of spam and small business.   Had a lot of very positive things going for me at the time.  All in PERFECT HEALTH.

Then around this time I was introduced to the love of my life Sandi.   Sandi has buried her first husband just a few months prior to us meeting.  He past away from a Melonoma that spread from his shoulder to the rest of his body and after a short bout with the cancer it finally took his life.   She was trying to re-build her life at the same time i met her.   I knew from the moment i saw her that we would never be apart.   I was still running my company at the time but the sales started to decline.   I decided it was time to marry Sandi but i needed to sell the company.  there was no way i would be able to support a family on the small salary I was making from running my mail order business.  I put the company up for sale and at around the same time my wife got pregnant with our first child, Sascha.     It took a while to sell the business,  once I did, Sascha was 2 or so, I took a  job as a operations Manager with a local Retail firm here called Robb and Stucky.   I was hired as the retail operations manager making $62,000 a year.   It was a tough job, but I was finally getting enough money that we could move to a nicer house and afford some decent education for our daughter.  We bought a house, moved in, all and all while I was working at the furniture company in an operations manager capacity.  About 4 years later after many failed attempts and 3 miscarriages for unknown reasons, my wife was finally pregnant with our second child.   About 5 months into her pregnancy,  the company I worked for started to run into some financial problems.    She was pregnant and the company was doing very bad.   It was a very scary because my wife was pregnant, we just bought a house and i was in danger of losing my job.   I quickly started to search for another job in the meantime and contacted a friend of mine who worked for GAP INC.   She said they were looking for store managers and would get me an interview.    I was part of a corporate lay off at the furniture company and a week later I accepted a job as a retail manager for Gap Inc.   I was so excited to find a job that fast and definitely with a new company that was right up my alley.   Gap inc has been around for a long time and the opportunity was definitely exciting.   I was in good health, Sandi was expecting our child after the miscarriages and it was definitely an exciting time for all of us.


I worked for the company about a month and then the most horrific thing that I have ever experienced happened.   It was something that would change my life forever.  To this day, things have yet to be the same.


I was just a normal 43 year old at work one day and new something was just not right. The day that i went to work was going to be a special day for me, but I just didnt know it.  Woke up and went to the gym, got my workout in for the day.  Headed over to grab a coffee at my favorite little bagel shop.  Went to work and for some reason about an hour into my day I started to get really bad back pain.  The pain radiated from around my right shoulder blade to the front underneath my rib cage.  It hurt really bad like someone had a finger in my back.  I also had really bad knee pain.  My right knee especially.  It hurt so bad i could barely walk.  I have really bad feet so I just assumed that the knee pain was from being on my feet at my new job all day.  I could hardly make it.  At lunchtime I sat down that day and i felt like i had a knife stabbing me in my knees.   On top of everything else, I had this horrible anxiety and tremor in my hands.  I have always had a slight tremor, but for some reason, that day was worse.   Maybe I drank too much coffee?   I was also very dizzy and had this weird buzzing sensation in my head (come to find out later that it was from thyroid shooting out in the beginning of my hashitoxosis stage) but I could not put my finger on it.  Why was this happening.  Did i have a bladder infection?  I kept having to pee that day, and i was extremely thristy.  Did I drink too much beer the night before?   It was a Friday and my family warned me that i needed to go to the doctor before the weekend as we had big plans.  Little did I know that this was the day that would be marked as the beginning of a year from hell for me and anyone that knew me.
 

There is a "care now" doc in the box place by my house that i drive by all the time.  I have never been in there.  That particular weeked we were going to take the kids swimming and I wanted to feel good.  I told my wife i was going to head up to the "care now" and see if i could get something for my "bladder infection".  I also had an interview on Monday that i set up before I got the job at the Gap and wanted to feel better for my interview.     I headed up to the care now and had a urine test.   My back hurt so bad, i kept telling the doctor I have never been in that much pain before and didnt know what was going on.  The urine test came back and everything was clear!    How could this be??  I was drinking and peeing at an alarming rate.  I had 3 of those medium size gatorades in one sitting and was still thirsty. He gave me a Z pack, told me to take it easy over the weekend.  

On Monday I made an appointment to see my family Doctor.  He was a new doctor, young guy, his name is Christopher Short.  He inherited his clients from a previous doctor who had the practice for many years.   He wanted to do a thorough exam and send me for a kidney sonogram.  He thought maybe that my urination and back pain was being caused by possible kidney stones.  Afterall, I ate a ton of protein, protein bars, eggwhites, peanut butter, chicken breasts.  I was in the MRI and asked the technician if everything was ok.  She told me that she couldnt tell me anything but she said "I wouldnt let this ruin your week".   My sonogram was clear.    On Tuesday I called my manager of my new job and told him that something was going on.  I told him I didn't know what, but I just didnt feel right.  I told him that I was really sorry, that I know i was only with the company for about a month and I was calling in sick to go see the doctor.   What was weird, that I didnt know at the time, is that I felt good in the morning, but for some reason had waves of death around 3 pm every day.  It seemed to happen right after lunchtime.   Every time I went for lunch, I would come back with the thirst, back pain, shakyness, dizzyness, knee pain, and horrible anxiety.  I couldnt think , nothing made sense.  The fatigue was so bad at times i thought i was going to fall asleep standing up.  The anxiety was beyond comprehension.  What the hell was wrong with me?   I called my brother to ask him his opinion.  He seemed to be a outside opinion and wanted to know if he ever had this happen to him and what did he think was going on?  "I dont know whats happening, my body starts going into this weird mode, I get really thirsty, my back hurts so bad I can barely stand up, my ears seem full, my mouth is dry, im sweating my ass off.  Im dizzy, I feel like I just got out of a car while reading. and the worst part about it is that no one knows what in the hell is wrong with me".

The following weekend, I had a new symptom.   My heart started to palpatate   I had these horrible palpatations like i was having a heart attack.  I was so scared.  I had to make my first trip to the Emergency room.  After an EKG as well as 2 bags of saline, i started to feel a little better.  However, after several hours after being in the ER,  they said there was nothing wrong with me and that i needed to follow up with my doctor the next day.  But I didnt have a Doctor.  I just had some family medicine guy who didnt have a clue of what was wrong with me.  I was so worried, my family was worried.  My blood pressure was 159 over 90 and i was RAPIDLY losing weight.   I started at 185,  was at 170 at this point.    

My young doctor threw his hands up in the air and told me that he was going to send me to see a very well known gastronologist.  Dr. Adnan Badr was in Plano, Texas.  The wait time to get in to see Dr. Badr  was an entire month!!   What the hell?   I never see Doctors.  Is this really the norm?  My family is very concerned for me.  I need to do my job.  My wife just had another baby and I dont feel well enough to participate.  Im so tired all the time, i can hardly think.   And of course, every single day my episodes begin right after lunch.  Same time, same bat channel.   I would make it 1/2 way through the day and have to leave.  Every day I was going home after lunch.  The anxiety was getting really bad.   So i decided to do something drastic.   I drove over to Dr. Badr's office and walked in.  "please see me, please see me now, something is very wrong.  My stomache hurts really bad and my gallbladder is screaming for help.  My back hurts, my ribs hurt and im very scared''.  Dr. Badr happened to be there that day and they actually allowed me to visit with him.  I also had chronic diareah.   Nothing ive ever seen before in my 42 years of life.

In the 2 year period that I did not know what was going on I was seen in the Emergency room 6 times.   4 of them was for unknown symptoms, just feeling horrible but not really knowing what was going on.   One time was because of heart palpatations, the feeling of having a heart attack.  One time i was seen for rectal bleeding as a result of the polyps being removed from me when they did the colonoscopy on me.   All together i spent over a month in the hospital with unknown symptoms.   I lost 15 pounds from the time all of this started until the time it ended.  Of course I was on heavy narcotics and a saline drip the entire time.   Meanwhile, my wife just had a baby, and i was missing out on a large part of the first month of activities because I was in Plano Presbyterian.   My hosptial notes alone are over 800 pages long from all the visits I had at the hospital.  And of course every single time I had to pay the deductables plus $100 per visit for these unknown symptoms.


Dr. Badr did some basic tests on me, wanted to admit me to the hospital run some tests on me but decided he would to a stomache scan as well as  Colonoscopy.    Both came back a little irregular but nothing answered why i had the horrible fatigue, brain fog, anxiety, diareah, sweats, high blood pressure, rapid pulse, nausea or ringing in my ears.   I did have Galbladder pain and he figured it was probably my galbaldder causing all the problems.   Afterall, by now i have been in the emergency room 3 times and nothing explained what was going on.   He decided that it was my galbladder causing everything, and decided he was going to take it out and hope that it helped with my symptoms.   He ended up removing it.   A couple weeks went by, was waiting for the symptoms to go away, but they never did.  Ever.   In fact here i am several years later, the symptoms are still here but i have learned to cope with some of them.

At this point i was extremely scared and made out my will and told me wife i loved her.  I knew that whatever this was doing this to me was either going to kill me or manifest itself.  We decided to give each other our anniversary gifts early as a precation.  A friend of mine had the exact same symptoms and found out he had non-hodgins lymphoma and died 4 months later.  We had the SAME SYMPTOMS!

For a second opinion I went and saw David Park.  Dizzyness, diahreah, weight loss, cramps, , ringing in ears, shakyness.  Dr. Park thinks that the symptoms are from the abnormal hormones which is causing anxiety, fatigue and pain.    I also wanted to see him because of the incredible thirst i was experiencing as well.    He also did some stool sudies as well as some blood work.   I have seen him a few times since.


My new family doctor , Ron Giometti told me that my thyroid numbers were a little elevated, but he told me that it wasnt in line with the symptoms i was reporting.  He did some basic tests and blood work to try to figure out what was going on, but he was a family doctor.  because of the bad palpatations i was having, he sent me to a heart specialist for a work up.  He referred me to Leena Sharan at the Heart place.

Dr. Sharan was made aware of the back procedure and all the issues i was having with the dizziness, tremors, chest pains and decided that i needed an echiocardiogram and to wear a heart moniter for the palpatations and to try to figure out the tremors.  There were a couple of skipped beats and she prescribed a mild beta blocker for this.   I only saw her twice.

I saw an Endocrinolist  in Plano, Texas Dr. William Sheldon.   Went and had blood work done with this guy.  He said there was nothing wrong with me as well.   My blood was slightly off, but nothing to worry about.  But of course, the symptoms lingered on and I kept looking.


I also saw a Doctor for neurology name Michael Seals.   But at the time it was too early in the process to figure out if this was a temporary thing or something permanent that he could help me with.  The appointment was pretty much a waste of time.



One of the best Doctors I ever saw in this battle was Dr. Steven Peskind.  He is an ENT  but has a sub-speciality in helping people with  tinnitus or ringing in the ears.   I saw Dr. Peskind about 12 times between 2011 and 2013.   He helped me with possible short term disability.  Dr. Peskind was the Doctor that I went and saw the day that i left my job out of stress when i was being harassed.   He is fully aware of my issues with anxiety, the ringing in the ears, the pain in my throat, Pains and dizzyness.   He was also one of the doctors that recommended i see more of a specialist to try to figure out the ringing in my ears and the hearing loss.   I also saw him because I was unable to swallow, had pains in my ears, kept getting sinus infections, my vision was blurry.   Dr. peskind also made mention that I should go get the opinion of a thryoid surgeon and sent me to see a Dr. Frank Theiland  just for a consult.  He also ordered MRI / MRI of the brain with and without contrast.  Also MRA  and Radiogram of the Cartid artery.  Also an image of the wheel of axis of the brain to rule out any aneurysyms or tumours.   He was also elemental in providing me documentation for my disability claim from work at Banana Republic.


Because I didnt know what was going on,  the doctors wanted me to see a neurology group.  I went to see Dr. Supriya Thirunarayanan.   When I was in her office, i was experiencing slight black outs from the intense ringing in my ears.  She wanted to run a cognitive profile on me amongst her tests.  This showed that my cognitive skills were below normal for a normal adult.  It showed my memory function was nonexistand, my executive function was low normal.  My visual Spatial was low, my verbal function was low and my motor skills were very poor.  

Then I decided to see a neurology group in Plano Dr. Charisse Barta.   Dr. Barta did a full work up on me and ordered some Brain scans and MRI's.   The only thing she said that i had wrong with me was an irregular blood protein in my blood.   She also ordered a Spinal tap.  The spinal tap checked for multiple sclorosis as well as cancers and lyme disease. Everything came back negative however because of the puncture wound in my back, i ended up in the emergency room and was given a blood patch.  A very painful procedure where they take blood from your arm and inject it into the back to seal the hole.  She also agreed that I have Benign Positional Vertigo.  I get dizzy very easily.   She ordered some Neurolphysiologic tests on me.  Since the abnormal protein is usually a precurser for cancer so she sent me over to Texas Oncology Dr. Thuy Le.  My symptoms were Fatigue, back pain, dizziness, palpatations.

Dr. Le was definitely concerned with the results of my results of my unusual blood immunglobin and decided that she would order a full work up on me including blood work, a full body scan, and a bone marrow tap.    After a few months of going back and forth with Dr. Le, the results came back and showed that the unusual protein needed to be monitered, but everything including the bone tap came back fine.  She also said that the full body scan showed that something was going on as far as the white blood cells and red blood cells being out of place.   While I was in her practice my pulse was 91.  This is very high for me.  She also thought that the thirst was an issue, and thought maybe endocrine related.  However i tested positive for leukocytosis.  This was definitely the tipping point for me, being told that there is a chance that all this may be cancer related.   Substantial relative increase activity in the spleen compared to usual and compared to the norm.   At this point I thought i had cancer and was definitely not going to make it through this.  They also concentrated on my back pain as well as the neck area because of all the pain that was going on.  Hemangiomas were found in the liver but that was nothing to worry about.   I was definitely concerned and this was definitely the part where I thought i was going to die.

I also started seeing some integrative doctors for hormone issues.  One of them I saw a few times is named Michael Sullivan.   He wanted me to get on a compounded thyroid hormone which i tried.  This did not seem to work at all but it was a trial and error process.


More missed work, more time away from work.  I knew they were growing tired of me, and they started to harass me at work.  They stared with the write ups, the audits,  coming into my store and starting to harass me for every little thing they can think of.   I could hardly function little alone memorize some of the things that they were asking me to memorize.   I had very little training, and they were ready to get me out the door which they finally did.  By the end of 2010,  I tried to go out on short term disablity, but they beat me to the punch and terminated my employment.   They were definitely harassing me and I hired an attorney to help me get everything sorted out including talking to someone at the EEOC who agreed that i was definitely being harassed because of my medical condition.   I worked there for 364 days.  On day 364 they came in to do a final audit which would of led to my termination, but i was out the door before they had a chance to terminate me.  



Here were my symptoms for about the first 9 months in order of severity:

Horrible back pain.  The pain felt like someone had their knuckle in my back right underneath my right shoulder blade.  The pain radiated around to the front and ended underneath my rib cage.  I had 3 back rhizotomys (cold water nerve destruction) to help with this pain.  NO ONE could figure it out.

Knee pain. My knees hurt so bad.  Was told that I had a weird rhumotology illness that causes arthritis.  

Thirst
Fatigue
Tremors
Anxiety
Galbladder pain
Feet pain
Sweaty
Memory problems (what did you just say?)  had to write everything down.  Thought first that i had dementia.
Weight loss, then weight gain
Nausea
Hard to sleep
Hard to wake up
Better after 5 pm

Then as time went on, my symptoms changed.  The back pain eventually went away.  The knee pain as well.  I do recall how bad it was.  felt like someone had a knife in my knee.

Then about 5 - 6 months later I took a step back and realized my new symptoms


Felt   drank 10 cups of coffee and took sleeping pills at the same time.
Horrible fatigue around 2:30- 3:00
Motion sickness
Anxiety, and agitation that was very extreme
Eye dryness
Hunger (air hunger - eat eat eat!)
Craving for salty foods like cheese, potato chips (found out later this was adrenal)
Better after 6PM
and the newest and most horrible symptom was EAR RINGING.  High pitched, all the time.
Heart palps.
zero sex drive.  zero

Taking thyroid of any kind only made the symptoms worse.  And on top of that, my hands and arms fell asleep all the time.  I had a weird buzzing in my head.  Not to mention horrible diahreah about 1 hour after taking the meds and lasting for about 4 hours.  Blank stare, could hardly use brain.  It was locked up as if i was injected with rat poison.   Also could now fall asleep but couldnt wake up.
 

By now i was out of my mind.   What in the world was wrong with me?  I have seen so many doctors and no one knew what was wrong with me.   My wife works for an insurance company and sometimes they have very tough cases to handle.   They always need second opinions from doctors and they have a few internal medicine doctors they use to figure these tough cases out.  Of course i didnt know what an internal medicine doctor was, in fact all of this was new to me.  A few months ago I never saw doctors.  In fact, I was the guy that got yelled at by doctors for not coming in to see them once a year.  Now i have pretty much seen every sub-specialty out there.    My appoinment with this new doctor, Dr. Bradley Jones was not for a couple of weeks.   However I called every single day to get in to see Dr. Jones.   One day i called and told them how i could not get out of bed and my ears were ringing so bad that i couldnt hear and felt like someone punctured my ear drums.   They finally agreed to get me in to see him.     I went on the appointment and started by seeing the PA Jenny Tran.   She took all my intake information and i spent about an hour with her.  Then i finally got to see Dr. Jones.  He assured me that he would eventually get figured out.   He said that what i was going through was very unusual but he would continue to check everything until he figured me out.  He sent me for more MRIS,  MRAS,  Blood work up for basic things, plus lyme.     About 2 weeks went by and he called me to come in.  Said he might have a clue of what was going on with me.  Based on my symptoms, and my blood work, he concluded that i definitely had Subacute thyroiditis which turned into  Chronic lymphomatic thyroiditis  which is very unusual for a male.  In fact 1 in every 100,000 people get this illness.  And of those 1,  they are women.  And then 1 in 1 million men get this illness.   That is why it is very hard for men to get diagnosed with this illness.  Because so many women get these disease but rarely any men get this illness.     And even though my blood numbers were off and i tested positive for the auto ammune disorder,  It did not completely explain why i had so many symptoms and was barely able to function.   But it was definitely a start.   I tested positive for Chronic thyroiditis.  Finally i had something to go on.    He also wanted me to see a psychiatrist because of what i was going through and thought maybe one would help me cope with the side effects from all this stuff.   He sent me to see Dr. Goyal.   

Dr. Manish Goyal worked off of the tollroad in Dallas.  She was an older woman who specialized mainly in anxiety.  She insisted that i went on Paxil but agreed that there was something medically wrong with me and was going to work with me on the anxiety and brain foggyness in the meantime while i went through all these tests to figure out exactly what was going on.   I believe I saw her 4 times for the anxiety, but the problem was that my symptoms were related to a medical condition which was causing the mental aspect of this.  She agreed to work with me and I agreed to work with her, however it was agreed that she would respect the fact that a lot of my issues stemmed from the medical situation and not the mental state.  The mental state was a symptom of the physical condition.  I worked with her extensively on the brain fog, anxiety panic attacks and the issues with the memory , but didnt seem to be getting very far with her so decided to stop seeing her.







I was sent over to North Texas Endocrinology in Irving Dr. Lalitha Subryanaman  (no longer in practice).  She wanted to do a sonogram on me, further blood work and start me on a stronger dose of thyroid hormone.  But the problem was,  whenever i took any sort of thyroid hormone, it just made me feel worse.  It didnt make any sense whatsoever.   So on one hand I needed thyroid hormone, but on the other hand whatever i took just made me worse.  She kept telling me that it was probably something else causing these issues and that I probably needed to go on some sort of anti-depressant or see a phychologist.  At this point I was already seeing one and these doctors that kept pawning me off on to the psychiatrist aspect of things were fighting a losing battle with me because i was already seeing someone and was trying to take the mediction they prescribed.    I still wasnt feeling any better and decided to go have some work ups at UT southewestern medical center.


My back and knees hurt really bad.    I was told that there was nothing coming up on the MRIS or scans showing why my knees felt like someone had a knife in them Nor why my back felt like it had a knife underneath the right shoulder blade.   I made a couple of appointments at Ortho Texas  ( it was called metrocrest orthopedics at the time.  The doctors were Phillip Graehl and Shika Sethi.    At the same time I went and saw a doctor over at Plano orthopedics.  The doctor at Plano orthopedics wanted to do some deep cortisol injections.  These are the ones that they knock you out for.    They sent me to a Doctor name Jerry Lewis to do these injections.    But they didnt seem to help.   Dr. Graehl ran some scans on me and determined that the only thing he could help me with would be a miniscus repair.  I went ahead and had the Miniscus repaired but my knees continued to hurt.    Then Dr. Sethi wanted to do a Rhizotomy on my back.  This is when they go in and kill the nerves when you are sedated.   I agreed to allow this to happen and went in.   All in all she did a total of three different procedures to help me with the back pain.  All three i had to have done under sedation and my nerves were all killed.  I was given a tens unit to wear which is a unit that has wires from it that plug into these pads that you pud on the painful areas of you back.  So in the end i had the 4 surgeries and wore the tens unit to help with pain.  Also on the knee pain , I was also given synvisc injections which is a lubricant that is injected into the knees 3 times to help lube up the joints and keep things moving.   Those didnt work either and were $1200 each.  Of course this entire time i was blowing out my medical deductions year after year on medicine and procedures.  



I decided to try a new doctor and went and saw Dr. Carolyn Harris.   She had really good reviews online and I thought i would give it a shot seeing her.   She said that she agreed that i had the ringing in my ears, Chronic lymphomatic thyroiditis, chronic pain, and anxiety.   Her suggestion was that that I try some different drugs to see if that helped me.   I was put on Ritalin,  propranol, and a little xanex to help with the anxiety.  She also recommended I seek phychiatric help and this was the third doctor that recommended that i seek such help.  But i was already seeing someone at the time.  Dr. Goyal agreed that i had some sort of medical condition and would also help me with Dr. harris a few times to see if i could withstand some sort of treatment.   After a few visits to Dr. Harris, I finally realized that there was no magic bullet.  At least with her.  I decided to stop seeing her.   I saw her three times.



I was reading online one day and found a Dr. that apparently was a pioneer when it came to this type of stuff.  The only problem is , he didnt take medical insurance so all my tests and visits were going to be out of pocket.  His name is Sam Marynick and he is associated with Baylor medical center.   I went and saw Dr. Marynick and he told me that in his 20+ years of practice he never saw so many symptoms in one of his patients.   At first he thought my condition was related to my back because I was in so much pain i was unable to squat down ( or move much in for that matter)  and ran some of his own tests on me to see if I possibly had Addisons disease or cushings disease.  The problem with him is, as smart as he is, i was paying $700 a visit to see him.  But he has this disease, his wife and kids so i figured he would know better than anyone how to help me with this.    But i could not afford him.

Everyone thinks of UT SOUTHWESTERN as the end all be all of medical institutions.  However with me, my main problem appeared to be either ENT related OR endocrine related.  And i was finding out very quickly that a lot of doctors did not know how to treat complex endocrine issues.  Only the basic ones.  So i was a little hesitant to come here.   But thought I would go in since it seems like this was where people found out the main reasons of their illness.  My first meeting was with a very young endocrinologist student who decided she would run some tests on me including thyroid hormone, testosterone, ACTH for cortisol, Pituary function and follicle stimulation tests.  Of course everything came back fine except the thyroid.  But she still didnt understand why i didnt feel well when i took thyroid hormone.  In fact, taking the thyroid hormone made my disorientation and dizzyness even worse.  Despite numerous tests there, there were no answers.   Then i saw the neurologist there.  He came to the conclusion that my disorientation, hands shaking, brain fog, poor memory were from the thyroid and he wanted me to continue with they thryoid route.   I also saw an ENT there that came to the conclusion that the ringing in my ears was part of the auto ammune process and had nothing to do with my ears and everything to do with the low thyroid.  If i was able to fix the thyroid, everything else would fall into place.  However, the endocrinology department said there was noting wrong with me and i needed to see a psychiatrist.   I was starting to see a pattern.   Everyone who could not figure out what was wrong with me, insisted that I saw a psychiatrist.   But i already went down that route.   And she knew that it was definitely not a mental ilnesss caused by anything but the issue itself, at the time this was unknown.   It was time i went to see someone fresh and decided to go to the Mayo Clinic in Jacksonville Florida.  

The Mayo Clinic In jacksonville Florida was a little tough to get in.  Usually they just see the worst of the worse and you have to be very special in order to get in to their clinic on such short notice.   They decided to see me but i had to board a plane and be there within 3 days.  Not a problem,  just a lot to handle on such short notice.   When you go to the mayo clinic, you stay in a hotel that is connected to the mayo clinic and you see several doctors every single day.   Its like a shopping mall of doctors.  You may see a doctor at one and 4 one day, then the next day see 3 more.  you just see Doctor after doctor until you finally have some sort of diagnosis.    Of course they start you off with a 27 vile blood test which tests you for pretty much a fishing net of possibilities.    Of course my thyroid and adrenals came back out of whack, but everything else came back normal except the blood protein issue.   I saw a variety of doctors therre including:

Neurologist
2 endocrinologists
Vestibular work up
Agricultural medicine specialist
Eye specialist
back specialist
Internal medicine Dr. 3 times
ENTS

The conclusion "there is something wrong with your thyroid.  What it is, we are not sure.  However when you take thyroid medication it is like splashing gasoline on a fire.   Go see your internal medicine doctor when you arrive back to Dallas.  Also your brain needs to be retrained to walk, and use since whatever happened to you, caused some significant damage,


When I came back to Dallas I got back in touch with the doctors at UT SOUTHWESTERN and they were furious that i went and seeked out a second opinion.  In fact they ended up terminating me as a patient because they didnt think i had the faith in them since i went and saw someone else.  So now Not only did they not figure out what was wrong with me, they told me that they wouldnt see me any longer and i needed to find a new doctor.  Thats when i looked up and found some specialists at Houston Thyroid and endocrine center Dr. Fareed Elhaaj.

 I ended up driving to Houston and staying over night there.   This place specializes in thyroid wheras other places specialize in other disorders including diabetes.   This Dr. Fareed Elhaaj definitely knew what he was doing.   I went to see him, had blood work, a sonogram and a consult.

Dr. Elhaaj did a sonogram on me where he saw that the right side of my thyroid was inflamed.  I told him all my bizarre symptoms.  He seemed particularly concerned in the sweating episodes i get when my waves of nausea come on.  Also he thought it was weird that my free t3 and free t4 are always within range but the tsh is way out of whack which makes him wonder if its a pituary issue.

He wants me to stop taking everything (im only taking testerosterone at this point) for 3 more weeks and then he wants me to have a blood panel done.  The things he is going to test me on are pretty much everything endocrine related.  I am anxious to have the tests done and get the tests back.  He wants to see the results of the tests and then I may go back to houston for futher testing or he may just do it over the phone.  the drive wasnt bad so Its not that big of a deal.

CBC
Comprehensive metabolic panel
hemoglobin a1c
tsh
t4 free
t3 free
t3 total
TPO antibodies
TSI  (for graves antibodies)
T3 uptake
LH
FSH
PSA total
Testosterone free and total
Prolactin
Cortisol
Metanephrines fractoned and free
DHEA sulfate


I also entrusted the help of an internal medicine doctor name JEB MIERS.    I only made one visit to him, but he basically could not figure out what was going on with me and suggested i saw some endocrinologists as well as neurologists. 


I realized this was now probably a metabolic problem and started to look at some alternative Doctors.  This was after doing some extensive research on the internet.   2 of them that i saw that dealt in thyroid mainly were Stephanie Elmore and Astrid Gutsman.   I found these two doctors after speaking with a pharmacist at Allen family medicine.   I started off with Dr. Elmore but went back and forth with both of these doctors.  They were completely aware of my neck pressure, light headedness, neck pain , myalgia, confusion, memory loss, depression, fatigue , weight loss, panic attacks and insomnia.    They started me on some alternative thyroid medication but it didnt really help much.  For a period of about 2 years I went back and forth trying to get the problem corrected.  Kept finding myself in the emergency room as a result of this.   Also my neck started to hurt really back.  I realized at this point that my thyroid probably was not working properly and started discussin the options for having the thyroid removed.  Dr. Elmore suggested a Thyroid uptake scan to see if i still had any function left in my thyroid.   The radiologist could not even get a reading it was so bad.  My neck started to hurt by this time and we started discussing having the thyroid removed.   Dr. Elmore wanted me to have it removed.  Dr. Gutsman said she would help me with the balancing of the hormones if i had it removed but did not want to recommend anything since she is a hormone expert and not a regular every day internal medicine expert.   When the thryoid came back with such a low function on the thyroid uptake scan,  Dr. Elmore suggested I find a surgeon.   At first I went and saw Dr. Alexander Dressel who specializes in people with chronic lymphomatic thyroiditis.   She said that according to my 7 sonograms, the thyroid is completely dead and might be the cause of a lot of my symptoms especially the Tinnitus and neck pain.  She suggested surgery right away, but i still did not want to have the surgery done unless totally necessary since i just had the galbladder removed.   We both agreed that she would do what is called a Full core biopsy.   This is when you are completely put to sleep and they go in and take a small piece of the gland to make sure you do not have any sort of cancerous or precancerous cells.    I decided to go ahead and do that.   They did the full core biopsy and it came back negative for lymphoma and positive for Chronic lymphomatic thyroiditis.    After this was done, i was still on the fence about having the thyroid removed.   My ears hurt, my throat hurt, i couldnt swallow, i couldnt breathe properly,  I was fatigued and was experiencing what felt like mini strokes or seizures which is all part of having this disease.

I also decided that it was time to seek more help as far as the psychology went because I was having a really hard time dealing with the anxiety and frankly, doctors were telling me that i was needing to see someone to help me cope with the stress of losing my job and possibly my family.   I decided to see someone name Neele Ferguson at New perspective Counseling services.   I saw her around the time I was deciding whether or not to have my thyroid removed.  I needed someone to help me put everything  in perspective as to what was going on, whether it was mental or physical etc.  I saw her for 5 sessions and probably would of gone for more, however I ended up having the thyroid removed and my focus shifted from seeing a psychologist to life survival.   



After much research I found a doctor name Carolyn Garner back in Jan 2012.   At the time I wasnt sure i wanted to have the thyroid removed, but after much debate and her conviction to helping me, I decided to have my thyroid removed on Feb 16, 2012.    They knocked me out and completed a total thyroidectomy.   The surgery was only 2 hours long, the recovery went quite well.  However the only thing that was gone with the neck pain and some of the ringing in my ears.  But everything else still remained.  The light headedness,  neck pain, myalgias, confustion , depression, and anxiety never left.    I have a scar below my throat that shows what i went through just to get rid of a few of the symptoms.   I went with Dr. Garner over Dr. Dresel because Dr. Garner decided she would keep me an extra night in the hospital to make sure i did well after the surgery and that they did not accidently hit the parathyroid instead of the thyroid.  At my preop visit I reported that the pain was gone, however everything else still remained as far as the whacky symptoms i was enduring.  



I also wanted to explore the ringing even further.  I saw a couple more ENTS  and was referred to the Dallas hearing instititute to get the ringing checked out and to possibly get fitted for hearing aids for the ringing in my ears.  The Doctors name there Is Yoav Hahn.    He did an extensive work up on me including hearing tests, hearing analysis, high frequency hearing tests.  He also sent me out for MRI of the ear drums as well as MRI of the pituary gland.   He recommended hearing aids to help combat the ringing in my ears.  Everything else came back normal within ranges.

There were a couple of doctors who took interest in me, but just couldnt put my finger on it.  Then there were the doctors who just really could give a shit-less and told me I was in need of a psychiatrist because there was no way my symptoms were real. 

BY early 2013  I have had 64 blood tests performed at Quest Diagnostics.  That was not including the ones that I had done at independent doctors either. 

MRI with without contrast brain  x 2
MRI with without contrast spinal cord
MRI kidneys, liver
Kidney sonogram
spinal tap/ Blood patch
2 sonograms thyroid no nodules
stomache scan
stomache MRI
Colonoscopy
MRI pituary gland
heart work up, stress test, Sonogram of heart
4 neurology work ups - head of neuro mayo clinic
full parkinsons work up/ ms work up - head of department ut southwestern medical
full lymes work up (twice)
sonogram of arteries in neck
vestibular work up
cancer work up including bone marrow biopsy
Full body cancer scan (peda scan)
MRI ears drums
Opthomology work up
ENT work up twice/ one by head of department ut southwestern medical
Pituary consultation head of pituary clinic, Harvard university Phone consult MRI reading
6 different endos in Dallas/ 1 in mayo flordia
3 neurologists
Infectious disease consultation
Celiac test
Full allergy work up for food
Rhizotomoy cold water kill back nerves t6-t10
Rhizotomy cold water kill neck nerves 6-9
Hidascan x 2
 MRI of brain with / without to look for hashimotos encepholopothy

And these symptoms kept getting worse:


EARS RINGING worse after 2 pm
ANXIETY worse after 2 pm
TIRED worse after 2 pm
HARD TO SLEEP WITHOUT AID OF SLEEP DRUG
SHAKY
HOT (USED TO BE COLD)
EYES BOTHER ME DRY ALL THE TIME
PALPS
CONFUSION



 

I am feeling somewhat better, but still not best.  I hired an accountant in 2014 to help me with the books, and also a bookkeeper to help me keep track of all my buying and selling.    I am still looking for answers for my medical problems because since i have one autoammune disorder, it can lead to another one.  I have to be really careful with what happens, amytime i get sick, any type of weird temperature I get.  My blood has to be monitored regularly and im constantly seeing doctors to make sure everything is in check.   In June of 2014  I was diagnosed with my second auto ammune diorder called Duptretryns contracture.   This is a deformaty of the hands and feet caused my an extra layer of scar tissue that appears in the hand.  For this I was sent back to Texas Oncology and Dr. Shwartz Recommended radition therapy.    I had 7 sessions of radio therapy to help my hands every day for two weeks.  While this is a benign condition, it has added to the issues that I have currently have.  SO on top of being beat down, fatigued with chronic diareah,  I also have the hand pain as well.  So far the radiation seemed to of worked.  But for 2014  I have blown out my entire medical deductable once again and caused quite a concern in my family as to my overall health.



In August of 2014  I saw a Rheumotologist to try to rule out any outerlying symptoms i still had including the Fatigue, tinnitus, and vertigo.  I saw Dr. Dipali Kapoor and she did a work up on me.   She had several blood tests run, and all have come back fine except the thyroid.  She also tested me for Rheumotoid arthritits as well as repeating the LYME test.  Everything came back negative so far, still waiting for the results on some of the items.