June 19, 2013

JOURNEY TO DIAGNOSIS

In August 2010, I hurt my left leg while doing water aerobics. Like many of you, I went to urgent care, the day after, and was told I pulled my calf muscle. I went to my primary doctor (who did not X-ray me) who sent me to physical therapy at the only place my HMO allowed. I thought I was going to be out of work for 4 to 6 weeks.  This was not the case.

After rigorously going to physical therapy and performing exercises every day, my leg would not get better. I was diagnosed with plantar fasciitis and other things.

During this time, I started swimming almost every other day.  I even had my dad eventually swimming.  This was when I started to notice something was wrong.  My dad and I thought I had pulled my shoulder while swimming because I could not lift my arm very well and I became exhausted trying to blow dry my hair. A simple task.

My dad said “maybe you should get a stool to sit on while you are in the bathroom so you don’t get tired with your arm”.  Seemed logical to us.  I bought two stools, one for the shower and one for when I put on make up or blow dry my hair.  Now looking back, why would a 38 year old person like me need this help in the shower when I had not been injured?

Little things, daily things, like this started to happen over time. After so much swimming and physically therapy I could not flex my calf muscles and I would tell Mark, isn’t this weird? He would agree and say well maybe your body is adjusting or you have not built enough muscle in your legs yet since you were immobile when you hurt your leg.

After swimming, I would come home and sleep for several hours.  I ended up in Emergency one of the times after swimming that day because I had chest pain and could not breathe. I told Mark it felt like a snake was wrapped around my chest and stomach.  ER did labwork and the labs showed a high white blood cell count.  My doctor never did labwork the entire time.  I ended up going to a cardiologist as well.

One day, I was walking to my kitchen and lifting the Brita water out of the refrigerator, and I could not lift it.  It was too heavy. To this day, this happens with my arms, they turn to jelly and become weak at random times.  This was all the BEGINNING of CUSHING’S. Red flags I never knew existed. 

I explained this to my doctor multiple times and I kept getting brushed off.  I went from specialist to specialist for my pain. With the HMO I was required to obtain an authorization every time and appointments took one or two months to schedule. I went to pain management, a neurosurgeon, and even an orthopedic surgeon. I was diagnosed with sciatica, a bulging disc. I was told my pain should not be that bad etc. I was told to loose weight.  I was not obese. My doctor even accused me of being bipolar, never had a problem a day in my life. I knew something was not right.

EIGHT MONTHS later, I finally returned to work, even though I still had pain in my legs and body.  I have worked since the age of 16 at various jobs.  8 months was a long time. 

The day I returned to work, in April 2010, was one of the worse days of my life. Three hours into work, I received a call that my dad had a heart attack.  That night, my dad died unexpectantly.  My mom and dad were married forever it seems.  This was a shock to my mom, sister and me.  My parents are everything to me, both of them worked really hard to give my sister and I what we needed to be successful adults in the world.  I can not begin to express how much love I have for my parents.  I have nothing to complain about. 

That time is a blur.  Two weeks later, I attempted to return to work.  While driving to work, on a freeway I regularly travel, I was suddenly lost.  I called my husband and told him I was confused I was on the 405 freeway and wasn’t sure which way I was headed.  I am a regular driver, never had a problem like this.  It scared me.  This happened to me, these moments, when returning from court for work.

I ended up in ER again with the same puzzling results.  My doctor took me out of work again for anxiety.  I HAVE NEVER RETURNED TO THAT JOB. 

I can not remember exactly when I decided to switch primary doctors, best decision of my life.  I remember the moment though. Mark and I were in my primary’s office and she said “you are never going to litigate again” and made reference to me being bipolar.  Mark and I left. We felt as a doctor she was not providing me with answers.

The next specialist was a hematologist.  He listened to us and had labwork done which pointed to rheumatology.  He confirmed my labwork was inconsistent.  Once again, another referral to the next specialist.  HMO process again. The rheumatologist could not schedule an appointment for almost two months. I repeated labwork with her.  It was a waste of time. I was told there is nothing wrong with you, loose weight that will help.

I obtained a referral for mental health because I wanted help with everything.  I was not the type of person to take a lot of medication but knew I had a fairly high tolerance for basics like aspirin and allergy medication.

Mentally health therapy started off well. I even took my medical file to explain my situation that I was going through an undiagnosed health crisis.  After months of this, my therapist told me I was overweight and a lot of this was due to weight gain and anxiety. I NEVER WENT BACK.

By that time, I had hired a natural doctor, who was a personal trainer, and acupuncturist.  I had lost close to 30 pounds and was doing well.  I was on a rigid diet. I kept a food log every day for several months.

I returned to my hematologist, who would not give up on me, and I found a new primary with all of this going on. I was desperate for answers.

I researched all of my symptoms on the computer and came up with Cushings’s.  I told Mark this is what I have. All of my 20 or more symptoms make sense.  Mark probably thought I was loosing it.

PART TWO JOURNEY TO DIAGNOSIS

In 2011, I found the new primary.  I took my organized medical history that was three inches thick.  I explained my history, who I was and what I did for work (an attorney).  The new primary looked at me and said, you are not crazy, clearly there is something going on with you physically, based on your medical history, results, and everything you are telling me.  I did not have to prove myself with her.

This was the beginning of reaching the diagnosis.  I explained I thought I had Cushing’s.  She told me how rare it was. We agreed to continue with testing and monitor symptoms.

One month, my blood sugar went up and down.  I tried to use a dietician from my HMO group, they only have one. I stopped going to her when she said that since I was undiagnosed it was difficult for her to help me and I should come back when I had a diagnosis.  Since I was using the private natural remedy doctor who was helping me loose weight but costing a lot of money, I was trying the HMO process to switch over to save us money.  Once again, the system failed me.

I checked my blood sugar almost 8 times a day for two months.  My primary was puzzled as well. I did not have diabetes but my blood sugar was borderline.  I religiously logged my food and sugar level. I was determined to prove myself to everyone that I was doing everything right. When I was on the treadmill, my blood sugar would just drop.

The next month, my blood pressure would go up and down. I was so paranoid.  In the middle of the night, I used my phone to video my heart monitor that I use when I work out to show my doctor that my heart rate was low and that I was having heart palpitations.  She looked at it and still thought I was normal, not crazy.  Looking back, the paranoia (although founded by physical symptoms), the anxiety, and depression were all RED FLAGS TO CUSHING’S. I was not acting like me.  My doctor told me that I was the person who would know how I was feeling.

Another month, my iron was low.  My Vitamin D was low and still is to this day.  All signs of Cushing’s.  I had acid reflux, which I never had before.  I went on medication for that too.  Every month there was something new symptomwise.  When you are going through an undiagnosed health situation it is important to log everything.  At one point I thought I was making it all up in my mind.  People tell you stuff like that, maybe you are a hypochondriac, you are obsessive-compulsive, you need another ditraction, etc.  This is not helpful.  With this disease, it is nearly impossible to explain all of the symptoms.  Imagine your entire immune and endocrine system being affected whenever the cortisol decides to shoot out of your adrenals. This is why symptoms vary for Cushing’s patients.

My primary was patient with me this entire time and reassured me it was okay to keep coming in monthly/or every two weeks to log my symptoms until we had a resolution. We noticed I could not loose weight anymore. I was down to 1000 calories a day. Each month I would change my diet.  I went gluten free for three months. I ate high protein low carb. I became vegetarian for two months. 

 I NEVER SHARED ALL OF THIS WITH FRIENDS AND FAMILY. IT WAS EMBARASSING AND I WAS QUESTIONING MY OWN SELF.

My natural remedy doctor basically told me it was all in my mind and I needed to try more and stay on the diet.  Once again, I NEVER WENT BACK. Would you?

My primary and I then got lucky, a rheumatologist was temporarily available in the same office.  He had an appointment right away.  Finally some luck.  I was diagnosed with Fibromyalgia that day and put on medication.  He reviewed my long list of symptoms on my legal pad, did testing and made the diagnosis.  To this day I believe that medication did help some of my symptoms and kept my immune system more calm.

However, with all of our bad experience with doctors, I contacted Blue Shield and requested a second opinion specialist for my Fibromyalgia diagnosis. I believe that any diagnosis that can change your life so drastically should warrant a second opinion.  I went to that specialist, who confirmed Fibromyalgia as well but brought up CUSHING’S to me. 

The two rheumatologist agreed together to RULE OUT CUSHING’S since it was rare.  But both agreed to think outside the box based on my labwork there was not something quite right.

In May of 2012, two years later, I was referred to an endocrinologist.  We met him right away he said I believe you may have CUSHING’S.  We tested urine, cortisol levels, had x-rays and MRI done.  CUSHINGS’S WAS CONFIRMED.

THREE MONTHS LATER, I was scheduled for my first surgery of my life.  BRAIN SURGERY. I was overwhelmed.  A week before surgery, we did obtain a second opinion.  We were told we were in good hands with this surgeon and surgery should be fine and it was our only/best option with CUSHING’S DISEASE.