February 1, 2012
So this is my first time blogging so bear with me a little bit as I get use to it.
I really decided to do this because when I became sick a few years ago I found a great deal of information and comfort in other people's blogs about their illnesses. As much as you can rationally tell yourself that you are not the only sick person in the world, sometimes when you are having an exceptionally difficult day it helps to know that someone else out there is fighting along side with you.
I am going to be as detailed as possible so that if there is someone out there like myself, who is falling under the umbrella of a multitude of diseases, then maybe you will have more information for your physicians. Before I go any further though, I have a rare neurological disease called Neuro-Behcets, and as you will see from my recent photo, I look happy, healthy and well, and for the most part I am very happy.
I began not feeling very "well" when I was about 12 years old. At this stage of life it was mostly a sense of uneasiness that I just couldn't shake, along with my mood cycling all over the place. I am well aware that the onset of puberty makes our mood cycle, however this was different and very difficult to explain....all I could really say was that I was cognitively aware that my mood was shifting and I was powerless over it. It often felt like I was standing and watching a scenario unfold, watching myself unravel and I couldn't stop it from happening. My mood got worse and worse as I got older and older. I reached out to anyone and everyone who would listen. It was so painful that at times I contemplated suicide, however I really believed that there had to be a way to get control of how I was feeling. I was very much aware of the impact it was having on my family and my friends. My family attributed my mood to the fact that I was a high achiever, and that there was a lot of conflict in my family home because I was from a large family - so eventually I came to accept that I must have a mental illness that was beyond my control.
I eventually graduated high school at the top of my class and was working full time in the community, and by all encompassing a strong community leader. I got in to a top University, but I was still completely dysfunctional when it came to controlling my mood and my relationships with my family. By age 20, I began forgetting full events, and would be unable to recall what occurred after many of fights with my family. I was eventually diagnosed with Borderline Personality Disorder, and began some treatment under the care of a Psychiatrist. I also had a strong sense of self awareness so I took control of this situation the same way I did everything in my life, and vowed to gain the best skills I could to handle my mood instability and emotional regulation better. However, despite all of my best efforts, by age 22, I had dropped from a B's in University to barely passing and was unable to "put the pieces together". This was my first major cognitive change. I was unbelievably scared. I became a student in the Disability Resource Centre, and had to read all of my exams out loud in order to just pass. It was like what I would read would go in to my brain and would be scrambled, and then what I would interpret would be completely wrong. I had extreme problems holding attention. I became very depressed, but I eventually graduated with my BA in Psychology at age 23.
I remember just not even knowing where to go at 23. I had this label of being BPD, and I really didn't feel as though I was getting better. I also would battle this tremendous fatigue bouts that would be debilitating. I would feel as though the center of the earth was sucking me in. Around this point in my life I also found it very difficult to stay well. During my final exams from University in April of 2005, age 23, I broke out in ulcers in mouth, all over my tongue, and down my throat. I had never experienced pain like that in my life. If you think that ulcers are canker sores, you are mistaken. I had canker sores as a small child and through elementary school. Canker sores, are small to medium sores in your mouth that hurt ALOT, however respond to different treatments, and to rest as they are viral in nature. Ulcers, are large pits that form on the lips, tongue, cheeks, throat, and grow and grow, and can get up to about a cm in width/length and have a white ring and are white and sticky in the pit and they literally do not stop pulsating all day and all night. I have resorted at times to T3's when I have several. They do not respond to any medication as they are not caused by any virus. I can go days with out sleeping and have ended up in Emergency with my Ulcers, where ER doctors (who have never seen them before) have literally thought I am off my rocker nuts. It is only now that they know the nature of my disease that they understand how much pain I truly am in.
By September of 2005, I broke out in the same Ulcers on my genitals...now this is not something I had really told anyone, until I realized how important it was to the disease. So if you are reading this, and you had ulcers on your genitals and some stupid doctor told you it was caused by a yeast infection, and you have never had one before, and you don't have an STI, go see a dermatologist or an Internist. Don't leave it. I could have had my diagnosis at age 23, not 29. This is a clear sign of Behcets, and any physician who knows Behcets, knows the Ulcers. I am being honest and brave and posting this for the world to see, so that hopefully someone else will get an early diagnosis. I hope I am writing this nicely and not meanly :)
So from there... let's see...I went into remission on my own for a bit I think. However I continued to have episodes where I wouldn't remember or know what was going on. My boyfriend at the time, would find me slouched over dazed out, and sometimes curled up in a ball screaming and crying. I was finally referred to a Neurologist and diagnosed with a seizure disorder. This was a wonderful moment for me as I began to better quickly. It was like night and day. I was admitted to the epileptic unit at Vancouver General Hospital for three weeks and evaluated and released with an inconclusive seizure disorder. I know now, that the reason it was an inconclusive seizure disorder is because the seizures were being caused by a disease. At the time, the Neuro team was not aware that I had Neuro-Behcets as very few physicians know of the disease. During my stay in VGH though, they found a brain lesion and sent me to the Multiple Scelorosis Unit, I was 24. This was the scariest day of my life so far. I remember the team of Neurologists standing at the end of my bed telling me that they felt due to my seizures, the fact that I had experience some facial numbness, and had some other weakness on the body exam, and this lesion, that they were very confident that I had MS.
It felt like at that moment that all of my hopes and dreams were being taken away. Everything flashes before you. Where will I be at 30? Will I get married? Will I have kids? Will I have a job? What will happen? Will I die? Some are rational thoughts and some are irrational. All of a sudden your life becomes illness even though it should become about living and health. In the span of 5 months, I had several MRI's, a couple of CT's, a Lumbar Puncture, Evoked Potentials, a genetics test, and several other meetings. Many of which started with "how are you doing?" or "We are sorry". Really? I usually wanted to scream. Eventually I realized that this diagnostic process was going to go on for a long time. They did find another lesion, but I was also a really healthy 25 year old, by that point. I exercised, ate healthy, didn't smoke, and for the most part had a super full life that I really wanted to live. I had a great group of supportive friends and by age 25, I wanted to have fun and leave the medical world behind. So things just slowed down. I was still having fatigue bouts, I would still miss work, I still got ulcers (not on the genitals) but I looked great and I had a job and I partied lots, so all in all - I was fine right?
At age 25 I ended a long term relationship and was living in the heart of downtown Vancouver with one of my best friends and working in the Dating industry. I had a great life. I loved every second of it, and I was definitely not going to let my health stand in the way, despite the fact that it really tried to sometimes. I would take green tea extract to keep me awake at work, my anti-convulsants to keep the seizures under control, and I would miss on average 2-3 days of work per month due to fatigue/sick. I figured I had things under control :) I knew my work didn't really like it that much, I knew they thought I took way too many Dr's appointments, and missed too much work, however I didn't know what else to do. I did my best.
I left work at 26 and decided to go back to school and because I felt so on top of my game, I also decided to go off my anti-convulsants. This was due partially because I had met an amazing man who I saw a future with and I wanted to show him that I could be drug free so that one day we could have children. I had also fallen into the trap of believing that because everything was so inconclusive that there really must not be anything wrong. This is when gradual HELL began...however, maybe this is what ultimately saved my life.
I went off my anti-convulsants in November of 2009 and by February of 2010 I was 30lbs heavier and was experiencing hot flashes to the point that I would have to change my clothes at my practicum. I also was experiencing huge mood fluctuations again, however I really believed that my boyfriend was the one to blame. I didn't clue in at all that maybe it was me, and maybe it was because I was having seizures again. I tried very hard to start losing the weight but it would drop, it just kept trying to go higher. I felt lethargic, and terrible. By August of 2010, when my now husband proposed to me, I was at my heaviest and didn't know what to do. My family doctor finally threw up his hands and looked at my entire history and decided it was time for me to see an Internist. If any of you have seen "medical mysteries" people always see internists because they are the most specialized physicians. My internist, is amazing. He met with me in November 2010, and he determined from my blood work that my female hormones, FSH, LH, Estrogen, Progesterone, had completely dropped off which led him to believe that there was swelling on the adrenals. I had never menstruated normally so this wasn't shocking to me. This also explained why my body thought it was in Menopause. He put me on Metformin, for diabetics, to stop the weight gain, despite the fact I have low blood sugar. It did the trick, however I only remained on it for about a month, due to the risk that it would lower my blood sugar too low.
He also took a very thorough history and said "I believe we are not dealing with MS at all, I believe you have Neuro-behecets disease". He also said that probably within a year we would have our answer. I was 28 years old at this time.
He referred me to Rheumatologist who was also wonderful. She found it very hard to believe that I could have Neuro-Behcets so she wanted to investigate for Lupus. The reason is that Behcets is a vascular disease found primarly in people of Indian descent, not Caucasian descent. Feel free to google the background info on the disease and you will see that caucasian is least affected population. As a result of the lack of information on this disease and the limited population of people with the disease as well as the limited amount of physicians with knowledge of the disease, it is a very rare, and life threatening disease, however with early intervention moratality should be significantly lower. I can tell you from my experience though, not one of my physicians will give me a prognosis because they do not know what my prognosis is. Living one day at a time, just got a whole lot sweeter. :)
I am going to jump to 2011 now. I began 2011 loving every minute of every day. I was flying high on life. I was engaged, and I had was working on my Paralegal Practicum at the government in the field that I had wanted to work in my whole life. I was so happy. I loved planning my wedding, (well some parts were terrible) but most of it was wonderful. I loved being a bride and I had two great friends also getting married so we were living in a bridal magazine. My husband, I think, hated it!!! LOL. However, things just started to get confusing. I would get things muddled, and makes mistakes, and not remember. I figured it was because I had a "bride's brain". It was my first time back at work in a long time, so I also figured it would take me awhile. It just seemed that simple tasks were awfully hard for me to grasp. I seemed to get a lot of "meetings" where I was told that I just didn't seem to get things, and why didn't I just come and ask. The problem was, I didn't understand what I wasn't getting. I tried to remain positive, but as time went on, it just didn't improve. Finally one of the Lawyers, took an interest in me and began mentoring me. She was wonderful. However, she too felt that I just was struggling a lot. Eventually my ongoing doctors appointments, sick days, and performance were too much for me to advance and a week before my wedding we parted ways, much to my disappointment. I felt very defeated because I just didn't know how I was ever going to manage work and my illness. I thought the government would be the most understand and in actual fact, there I felt like I stood out like a sore thumb. I don't want to be different, I just want to be able to manage it, and be able to do both.
On September 24, 2011, I woke up to beautiful sunshine, and warmth and the knowledge that I was going to marry the most amazing man in the world. I was so excited!!! The day was perfect, from the beginning to the end. My bridesmaids were beautiful, and my photography/video team was out of this world. I just couldn't have asked for more. I had so much fun and I don't think I stopped smiling. I really felt that I my life was perfect. I have been so happy for so long, I didn't know what I did to deserve another perfect day. I was feeling a bit off though, dizzy and struggling to hold attention. I figured I was just tired. I really had an urge to lie down, which obviously you can't do lol. At the end of the reception during dancing, I suffered a massive seizure. Lots of people think that I was just "heavily intoxicated" because I vomitted alot, however I will let those individuals think what they want to think. I was unconscious, and vomitting and was taken by ambulance to emergency where I came to about 5 hours later. I felt very confused and anxious the entire next day. I followed up with my Rheumatologist on September 26, where I had another seizure and was taken to Emergency at St. Paul's Hospital. My Neurologist was paged and the neuro team began trying to control the seizures. They ran an EEG and found that my seizures "were a mess" and "very bad". It was at that time that they immediately started anti-convulsants again, and then ran an MRI, because I was scheduled to leave for my honeymoon on the 28th. On September 27th, 2011, My Neurologist came in with her senior resident and told me that there was a new lesion patch and swelling down a vein line, as well as hazing over the brain. This was a conclusive result of Neuro-Behcets. I have to give my neurologist immense respect for the way she told me the news in St. Pauls Emergency. She has been my neurologist for several years and knows that I have been through the ringer and back with diagnosis and she showed me so much compassion. She was caring, kind, and let me ask questions, and she didn't leave until I was ready for her to go. Plus, despite what she really wanted, she let me go on my honeymoon!!!! with a bottle of Ativan to control my seizures with all of my other meds, and the condition that I would fly home immediately if I had a seizure.
So what does this mean....it means that since September I have been trying to come out of a fog. I was pretty cognitively impaired after the big seizure. I had a hard time getting words out, and remembering even the smallest things. I take Imuran 200/day, Topomas 400/day, Folic Acid 5mg/ Asprin daily 80mg. I have had one bought of 3 days of IV steroids which improved my mental clarity and I am looking forward to the second. I think I am doing better! I look forward to sharing my journey with you!!!
I hope this will help some physicians as well. Please feel free to ask me any questions. I am very open and honest. There were so many times, when I was up late that I wished I could have asked someone questions.
Have a great day!