My name is Cindy and 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 third nerve as well as my left fifth and seventh nerve with left cortico-spinal 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 negative) 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 referred 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 steroids 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 lists 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 traveled 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 veins are almost non existent, so getting blood is a challenge. 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 positive attitude towards life and to help others through their journey of dealing with Behcet's Disease.

September 2007 my Remicade treatments have been going well and have 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. Therefore 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.

LIFE IN 2008

I finally finished my chemo treatments after having a very difficult time with it. I needed medications to boost my white blood cells and ended up in hospital for blood transfusions in which I in this day and age received the wrong blood type. Just my luck! As it turned out I did have a reaction to the blood transfusion and will have to be cautious for the rest of my life. At the end of February and started on my Radiation treatments. Not very long after that I found out that I carried the Breast Cancer Gene and that changed things once again for me. It was more surgery now. I had to have my ovaries removed due to a higher chance of ovarian cancer. I also opted for a double mastectomy with reconstruction with the tissue coming from my abdomen. I couldn’t have implants due to having Behcet’s because my body would just attack the implant and I would need it replaced every few years, so this was the best option.

The reconstruction surgery was a 12 hour surgery and was very difficult. I ended up having many complications I believe because my body was not healing the same way someone with out having a Vascular disease would. As it turned out I ended up having to go back in 3 months later to close up the open wounds. During this time my Behcet’s was also starting to get out of control once again and I was back into the hospital with major flares and pulse steroid treatments to just get me through. It was a very hard year.

UPDATE 2009

Surgery is finished for now and my Behcet’s has now become the major focus once again in my life and the most disabling. So despite everything I have decided to go back on the Remicade treatments, as this has been the only thing in the past that has helped me. I stared my first treatment in January and I could feel the difference right away. It is now the end of February and I am having my third treatment. It is helping with the Behcet’s symptoms. I’ll just keep my fingers crossed that it continues to work and I remain cancer free.

At the end of August, I realized that the Remicade treatment was no longer working for me and I had started to build up antibodies to it. This meant it was time that I had to come off of it. We then started looking for other treatment options and came up with Simponi the new sister drug to remicade. Before I could get onto the new medication my body took a turn for the worst. I started to develop this pressure sensation in my head. It was so bad that I had to sleep sitting up. This went on for about a month until I started passing out. One morning I woke up to find my face, head and arms swollen about three times their size and my lips were a little blue. I was having trouble breathing with any kind of movement so back to the hospital I went. After going to the emergency department two times and beeing sent home on my third visit back I instsited that something be done and I get admitted. I knew something was really wrong with me. Finally I was admitted and then rush out to a larger hospital. It turns out that I had SVCS (Superiour Vena Cava Syndrome) in other words I had massive blood clots in my chest. It was now a very serious matter and I was placed in the CCU unit at the hospital while fighting for my life. I had more clots in my chest by my heart and going into my jugular viens then they had seen before. They took an unusual approach to break up the clots and ended up doing two angioplasty on my entire chest area. I was in CCU ward in the hospital for over a week, then transfered onto the regular ward. I now have to take blood thinners for a very long time in order not to form these clots again with any luck.

I am now on the Simponi and have received 5 treatments. I have just started to notice some small effects of if as far as the joint pain, headaches, skin lesions and ulcers. I hope the effect improves as I do more treatments because the effects are just very limited right now. If the effects don't outweight the benefits then I will have to go off of this one as well and wait for another new treatment to come along and try. Sometimes I wonder when did life become this tough? The one thing that I do know is no matter what, life is what you make out of it and how you see yourself in the world. I refuse to view myself as a diseased person but a person who has faced a few bumps in the road of life and has learned from them.

Staying Strong & Hoping for a cure,
Cindy