It started when I was in my late teens and early 20's. My behavior started to change. I went on spending sprees, exhibited promiscuous, felt invincible and that the world was mine for the taking. This lasted several years until depression set in. I had a son from a stupid relationship with a guy I really didn't love and was not devoted to. THIS IS VERY IMPORTANT... that child turned out to be one of the best things in my life by giving me hope and the desire to change my behavior. I was hospitalized for thoughts of suicide, explained my complicated family life to the doctor, and was discharged the next day with 10k of hospital bills but had no diagnosis.
Eight years later, I was 29, the mania returned.This time the euphoria had become anger. Not the kind of anger that everyone feels from time to time, but a deep seeded loathing to lash out at the littlest annoyance. I was David Banner one minute and turned into the Hulk the next minute. I had been married to a wonderful man who loved and adopted my son. I knew there was something wrong and everyone else wasn't to blame, but didn't know what to do about it. This went on for nine or ten months before we sought help from a GYN because we assumed it was hormone related because my body had stopped menstruating regularly for the past several years. I was put on progesterone. The feelings went away, except for occasional outbursts, and then three years, we were blessed with the news that we were going to have a baby; until four years later.
I am sad, frustrated, and angry with the doctors I've had over the last 25 years. As a patient, it is so important to trust yourself and get a second opinion. Here is my history of being passive.
1990 - Vertigo, spots before my eyes. Thought nothing of it. Went away within a month.
1991 - Teeth pain. Had root canals. Multiple dentists said it was sinuses.
1992 - In Feb 92, I had my first sinus surgery. Did not stop face pain.
1997 - 3 car accident, I was driving a small truck in the middle. The seat broke, forcing my head through the back window shattering the glass.
1998 - Horrible headaches. Face pain, more dental work.
1999 - Tremors started in my hands and legs. Leg spasms blamed on pregnancy pressure on nerves and muscles. All lab tests started showing a RBC decrease (never mentioned by doctors until 2013 when I did a blood trial for Kaiser in December 2013).
2001 to 2006 - Tremors continued, I'd trip, lose my balance, I'd get confused, my legs itched like crazy at times. I discussed these with my GP. Blood tests showed signs of anemia (never discussed), I still had face pain. I was depressed to the point that in 2003, I checked my self into a mental hospital. There I was diagnosed at Bi-polar and put on Lamictal (anti-convulsant and mood stabilizer).
2006 - Between 1999 and October 2006, face pain continued. More dental work. Sinuses blamed, so a doctor performed a second surgery. In December of that year, I went back to say I think I was leaking brain fluid, but the doctor dismissed me and said it was because I used a Neilmed Sinus Flush and to take it easy and bed rest for a few days.
2007 - Leaking went on and off, sinuses were blamed. In Feb, my dentist said the face pain was probably Trigeminal Neuralgia and advised me to see an neurologist. I was diagnosed in 2007 with TN in Aug. Later that year, I began experiencing a shocking type of pain in my head. It would start in the back of my head and, like a dimmer light switch, would increase and then decrease in intensity. The neurologist gave me shots in the back of my head and I haven't experienced this type of pain since.
2007 - Weird problems on and off. Anything mood related was blamed on bipolar. I believed this was MS and told my family of my concerns. I was dismissed by doctors. Face pain blamed on TN. Sent for MRI of brain and it was clear, so doctors treated me as if I was a hypochondriac. Nasal drip continued from the right side of my nose. Blamed on allergies. This continued on and off for years. I developed a cough and get a sore throats and ear infections, which the GP would give me antibiotics.
2008 - Wanted to lose weight because of aching, breathing, tired symptoms. Went through Kaiser's pre-weight loss surgery classes for the gastric sleeve. Lost 25 lbs. dieting. They couldn't do the surgery because of a sever vitamin D deficiency. On high dose vitamin D. RDB still in 8s but not discussed with me.
2009 - Sent to an allergy specialist. I explained the dripping, which was dismissed. Coughing and out of breath blamed on asthma. Given a breathing machine. Didn't really help. Blamed on obesity (which is true, I am fat), blood tests now showed RBC in mid-8s (never discussed). Given antibiotics every 6 months. Other symptoms body soreness, hands not working right, trip, balance issue, dizziness, tiredness, heaviness, and other things I can't remember.
2011 - Going to doctor about every 4 months. Leaking from right side almost continuous. Told allergist I thought is was brain juice. Heart started racing. Did EKG that read normal.
2012 - Losing about a teaspoon of fluid through my nose every half-hour. Allergist sent me to a specialist in June who confirmed it was CFS. Sent me to another specialist in Anaheim. In July, the specialist did a camera scope up my nose and detected a hole the size of the tip my pinky finger in which my brain had fell into. Surgery was scheduled for October. Repaired the leak. Did blood tests (still no discussion of anemia). During surgery, the doctors could not do an epidural because there was no CFS in my spine. I believe that because I had been taking Lamictal for bipolar I did not experience seizures, Tylenol for pain (about 2000 - 3000 mg per day), and antibiotics every 4 to 6 months for what doctors had said was a sinus infection probably protected me from getting meningitis or other brain infection.
2013 - Felt okay, tired, tremors continued, other issues like horrible right knee pain, but basically compared to how I felt before I was okay. Sent to orthopedic doctor. Diagnosed with osteoarthritis, but Kaiser wouldn't do knee surgery because I wasn't over 50; he gave me a knee brace. Had lab test for Kaiser study where they noted to doctor that my anemia was in the low 8s and to let me know asap to come in for an appointment. On December 29th, the Kaiser GP left a panic message for me to come in to discuss blood work. I explained we'd moved to Texas and I would no longer have Kaiser.
2014 - Found a good TX doctor. Sent me to specialist for Upper and Lower GI Scope. Found some hemorrhoids and stomach polyps, but nothing that explained tiredness and other symptoms. Tremors and hand pain blamed on carpel tunnel. Had knee surgery in December 2014 (best thing I ever did). My internist (GP) monitored my blood every 6 months. Anemia continued. Took iron pills, but the made me sick. Was told breathing problems was weight and I didn't have asthma.
2015 - Lost about 30 lbs. Started feeling better. Almost all symptoms of dizziness, body soreness, tiredness, etc. gone, except anemia and tremors.
2016 - Had bladder problems with leaking. I believed it was bladder prolapse. Referred to obgyn. Doctor was rude and didn't believe me about prolapse, blamed on weight. Anemia got worse. I refused to go back to that OB office. Tiredness, soreness continued. Had another GP in my doctors office do a vaginal exam and was told I did have some prolapse and to do kegel exercises and use an over-the-counter bladder sling.
2017 - Anemia got worse. Blamed worsening symptoms on anemia. Went back to OB office and got another doctor, and was scheduled for a hysterectomy in May. Symptoms of feet and hand pain, balance issues, etc. continued, but anemia gone. Went to pain doctor who said maybe feet braces. I explained all my symptoms and asked the doctors (both pain and my GP) if it could me Marie-Charcot-Tooth because I have high arches and it is a neuro problem. I was dismissed as plantar fasciitis and hand numbness as carpel tunnel. The feet braces does nothing for the pain in my feet.
This November, I ignored the diagnosis because I knew it wasn't carpel tunnel. All my symptoms matched a neuro problem. I scheduled an appt with a neurologist who sent me for an MRI. I will post the images of the Nov. 2017 mri alongside the images from 2007 and 2014.
All I want to know is what the hell is wrong with me. It has been 25 years of playing a character actor on the Fox series HOUSE. My family is sick of me always complaining and it makes me wonder at what point does everyone just tune me out? It seems like doctors already have.
