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| BEHCET'S ONTARIO Canada |
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| CINDY'S MEDICAL JOURNEY |
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| I was diagnosed in 1996 with Neuro-Behcet's. My journey started 1 year after having my son. (After 5 years of trying) My first major flare was when I was watching T.V. and all of a sudden I got this execrating pain in behind my left eye. It felt like someone had taken an ice pick, jabbed it into the back of my eye and started to push it out from behind. There was a lot of pressure. Then my left eye started to close and droop, followed by left sided numbness of my face. Also I started loosing sensations on the right side of my body along with weakness. I was taken to the hospital and then rushed to another by ambulance. They thought I had an aneurysm. I was sent for an angiography right away. This test turned up negative and I was told that I probably had a rare form of migraines. ( I had suffered from migraines since I was a teen but this was not my ordinary migraine). I was then sent home after my tests came back negative. Four weeks later the same thing happened again but this time I presented with some newer problems as well. I had that incredible pain behind my eye, the facial droop, numbness, pins and needles and right sided weakness in my arm and leg. I also developed blurred and double vision, had slurred speech, memory problems and word finding difficulties. Again I was rush to one of our major hospitals by ambulance. When I got there I was examined by a variety of doctor's. I was found to have left sided ptosis, left retro-orbital pain, diplopia and ataxia as well as left facial tingling and right sided weakness in my upper and lower extremities. I also had a horizontal nystagmus, left facial droop and 80% decrease in the left sided facial sensation. I had a right sided spastic catch, a mild right hemi paresis and was found to be mildly hyper-reflexic in my right extremities. I was thought to have neurological deficits which localized to the mid brain involving my left thrid nerve as well as my left fifth and seventh nerve with left corticospinal tract findings. I was also found to have no gag reflexes and my tongue deviated to the right when protruded. At that time the doctors called my family in and informed them that they believed that I had a stroke. I was only 30 years old, how could this be. After many more days in the hospital and a battery of tests, (that all came back negitive ) I was told that this was all in my head. I couldn't believe that they were saying this to me. I was still in a lot of pain and had major ulcers in my mouth and I was now spitting out blood. I was discharged, sent home and refered to a shrink. I did keep my appointment with him. I guess I thought that something was doing this and if it was really me I wanted it to stop. The good news was that I wasn't crazy but the bad news was that they still didn't know what was wrong with me. The search was on. After 2 more years I found a doctor who knew what was wrong with me. I had Behcet's. Since then I have had several more attacks. Averaging at least 3-4 times per year. The only thing that seems to help me is to go to the hospital and be treated with high doses of steriods and pain medications through I.V. I have been on so many drugs to try and control this I could start a small pharmacy. My list of problems never seem to stop growing. I am now on permanent disability. I never know from one day to the next if I will be able to get out of bed or not. I've had to have wheelchairs, walkers and canes to help me get around. This disease is so painful. The fatigue and headaches alone can be so debilitating not to mention the ulcers. I have even travelled to the States to visit a doctor at the Mayo Clinic in search of some answers. Just when I think ok I can handle this, something else seems to go wrong. It just never ends. It's hard for other people to understand how you feel because you look good on the outside. While at the same time your body is going crazy on the inside. In March 2003, I was also diagnosed with having fibromyalgia. But above all the pain and frustration with the disease and the doctor's, there is one thing worse. That is when my son wants me to play with him and all I can say is "not today honey, mommy is just too sick" UPDATE - 2007 It is now 2007 and I have to say I have still been dealing with Behcet's head on. Over the last four years I have had several major stroke-like flares. I have had skin, joint and back problems in addition to everything else. My blood work is never good and now I have a vitamin B12 deficiency. I have had two port-a-catheters placed into my chest as the first one developed blood clots. My viens are almost non exsitent, so getting blood is a challange. I have optic neuritis, intestinal problems and a host of other ailments. Through this time I have tired several combinations of medications even having IGIV - (Immune Globulin) treatments. After five years of red tape I finally got approved for Remicade. I began my first treatment in Spring 2006. It has been a year now on this new drug and to date it has been the most successful for me. I am not in remission, far from it but at least now I can start to enjoy life. I try to maintain a postive attitude towards life and to help others through their journey of dealing with Behcet's Disease. September 2007 my Remicade treatments have been doing well and has kept me out of the hospital to the most part. It has been good to have some kind of life back. But as always something seems to want to set me back again. I have just been diagnosed with Breast Cancer. I know that I am a fighter and I will get through this too. It is just another journey that I must follow. November 2007 my breast cancer turned out to be a very aggressive form. Therefor I have had to have surgery and they have started me on chemo treatments to be followed by radiation. This whole process should be about a six month event until I am hopefully free of the cancer. I don't believe that any of the medications that I have been on has contributed to this type of cancer and I am going back on my Remicade as soon as possible. I look forward to getting back to life and consider this just another bump in my road of life. |
| Staying Strong & Hoping for a cure, Cindy |
| For a more detailed story and experiences that I have had to overcome please feel free to email me at cindy@behcetscanada.com I may not be able to respond until the new year due to treatment for my cancer. |