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Jennifer's Story

My name is Jennifer Poland , and I became sick in the beginning of Feb.2002.

I was two days into my trip to Massachusetts and I woke to about 50 {I swear} sores in my mouth and my tonsils swollen and on fire. Went to ER there was given Zithromax and Famvir. Famvir is for Herpes but these sores run along the same family Dr. says. There were so many sores that the Famvir should give relief. Went home a week later {7 days now} No food. I am starving. No relief. I have cried from the pain in my mouth. I now have headaches that are at the top of my head. Not the front {sinus}.

We went to family Dr. here in Virginia. Given Vicodin for headaches this paste for the sores to help numb my mouth so I could eat. But still could not eat. To painful.Sores keep coming and I am still starving. Help and food is all I wanted. Nothing was working as far as meds. I started drinking Slim Fast just so I could take my other meds. By late Feb. I went ER in VA. and once again given Vicodin for pain and a solution to numb throat. I had severe Tonsilitis with sores still all over my mouth. weild rashes were coming up.

Three days later at GYN for a discharge and pain in my vagina . Guess what? Sores went for a ride downtown. I cried more and more. Was tested for herpes. Now all I could think was I had gotten something off the Jersey Turnpike going to
Massachusetts. Put on a 1g Valtrax pill for Herpes. 8 days later. No change. Still had everything everywhere. Multiplying. Have now lost 26 lbs. Still hungry. I am tired. What is wrong? Why won't anything work.

GYN sent me to a Infectious Disease Specialists. Oh! my GOD! What is IDS . Had never heard of one. He ran blood tests, gave physical. Gave me a name for the sores. APTHOUS ULCERS. Gave me a swish and spit solutions. Finally a little relief but not healed. 7 days later while waiting on tests my ankles swelled with these large red welted knots or just welted rashes on chest , inner thighs and calves. I wanted to die. I can not take any more.everthing now on my body here. Rash welts on my eyes that itched horribly. I saw spots half way down my vision. Noise I could not stand. I have an 7 month old girl I had to get help caring for, could barely walk without crying.

Found a disease in my friends medical book called Steven Johnson Syndrome. I had every symptom breaking out on me. What next? Whatever it is this has to go or I will. I saw my therapists more. Went to my family Dr. the next day and should him the new look to my body. Help me is all I asked. He said no to SJS but he believed I had Eryrothema nodosum and called Dermatologists. Derm said over phone he believed I had Behcets. Where was he in the beginning? Went to Derm next
morning he look at me and put me in hospital and steroids in my iv and all symptoms started to fade. I now take Imuran 50mg daily and 60mg predisone daily to control the most part of this disease.

There are others for all the symptoms but by the ulcers being at a minimum of one a week if any unless I get sick and it causes a small outbreak. This is gonna be a long trip with a lot of bumps that I don't want. I am only 31 and I feel 80.

ps. e-mails welcomed.