First Post

[Coalbeach]

Hello,

I was diagnosed with Behcets many years ago, but, never started on immunotherapy as recommended. Over the years, I have been diagnosed with migraines, TIA, mild stroke, cerebral clot/ischemia with residual neurological problems with dizziness, balance issues, memory and cognitive processing issues. I had a (DVT), white matter brain lesions, pulmonary embolism, and a blood clotting disorder, now on long term anticoagulants. I also have acute bleeding requiring transfusions, mouth ulcers, esophageal and GI lesions, and iron deficiency anemia. Often I have leg, ankle and feet swelling, all types of skin rashes with high sensitivity for reactions, joint and muscular aches and pains, two hip replacements, hearing loss with deafness in one ear, vision deterioration, scalp folliculitis, osteoarthritis, high blood pressure, and now obesity with many of the last few years sedentary due to hospitalizations and surgeries.

I regret I did not go on immunotherapy sooner, but, am optimistic I will have good results and can stop worsening of this illness.

I am a psychiatric Clunical nurse specialist and nurse practitioner, but, have not worked formally in 7 years. I tried going back to school to start a doctorate to teach nurses, but, I struggled with the learning and getting papers in on time. I am wanting to continue working in my field, on a part time basis.

I love my GOD and all my roles as mom, Grammy, aunt, friend, volunteer, etc. I love life, but, often cannot accomplish physical tasks very well due to tiredness. Most times, I do not know where to start.

I am looking forward to meeting everyone and learning from you. I also hope I can be support to the group as well.

Love and Prayers Toni Ann Bereskie

[012703060610]

I feel for you. I just turned 45 and in the past 5 years, I have received so many diagnoses, you would think I made it all up. Literally, my own Father, who has witnessed plenty of issues associated with my diagnoses, does not see that my future is dark and complex. If it were Behcet's only, I managed it find with oral steroids as needed. My dentist actually diagnosed as he works at a University with other specialities to back him up. Oral sores had always been an issue but fought through some nasty ones. I get quarter size ones down my throat. Then the joint pain I numbed away with Aleve came on severe when I had to leave the workforce. Full time on planes, trains and automobiles for 20 years. Turns out I have a clotting disorder and cannot take any thing that thins the blood. I was getting epic nose bleeds. Long story short, I am on Humira. Pain to fight for it with insurance as it's $8k a month. It has pushed my rheumatoid pain back totally. I still get sores, but smaller. Haven't had a vaginal sore for a few years now. If it is close to the front, I actually crush up prednisone into a paste. Yes, it tastes awful, but speeds up healing very quickly.