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Cherry's Story

Hi! My name is Cherry.

My primary physician thinks I have Behcet's, but I know I do. I'm waiting to see the Rhematologist, this month.

This is so strange, I suddenly feel like there's hope! As the tears are rolling down my cheeks, I finally know I am certainly not alone.

My family has a long history of Rhematoid and Osteoarthritis. My mother is disabled from it.

I am 39 years old and have had a chronic "hypochondria" for 19 years. I started having erythema nodosum, after I had my first child. I kept having red painful areas arise on my shins. They were so tender, if anything touched them, it was agony. I went to my doctor, and he biopsied these areas, and told me I had erythema nodosum, go home, nothing else to do. During both of my pregnancies, I had diabetes, and took insulin. After my second son was born I took oral anti-diabetic meds for quite a while. Then my bloodsugar nose dived, and it fluctuates still, at times. but no further medications for that Thank the lord. I seemed to do alright after my children were born. Then one day I was sitting at my desk in the office and I had a headache that was a killer it continued for 13 days.

I was hospitalized, and nothing helped. My doctor finally decided to do a spinal tap. It was so painful, but The minute the fluid was drained, my headache went away, and I was discharged that same day, without any diagnosis. My headaches contiinued to come along with more frequency. I spent 12 years-in and out of the hospital, every week to 2 weeks, with severe headaches. I had hundreds and hundreds of spinal taps, until I had a shunt placement. I have had 4 shunts- for the pseudo-tumor cerebri. I need a new shunt, but my neurosurgeon-abandoned me. During this period of time -from 12 years ago until this very minute- I have headaches every day - they just vary in intensity. I can tell you when a front is coming highor low.I know when the weather is changing. I'm like the walking weather channel. On top of the pseudo-tumor, I was also diagnosed with vascular headaches. My treatment consisted of 12 years of an unaddictive- drug called Stadol nasal spray. Believe me- it is highly addictive. And I went through 12 years of torture with the headaches and drug addiction.

For the last 12 years I have developed symptoms, that flare and remit, in some unknown fashion. They include but are not limited to: Severe chest pain, Asthma?, Leg pains that shoot down my legs- and feel like hot pokers. Chronic intolerable headaches. Constant skin bruising and petechia. Rash of unkown origin. Mouth ulcerations. Loss of hearing and vision. Depression, Inability to sleep. Leg swelling, Arthritis in my hips, feet, elbows, knees. blood clots in my right leg during pregancy. And on and on, I won't bore anyone with the rest, of the story.

My sister was diagnosed with this several months ago, when she started having similar syptoms that mirrored mine. I went and saw my physician who looked over everything, and he told me he felt I had Behcet's, but needed a diagnosis from a Rheumatologist. So here we go again. I take medicaitons for: thyroid, depression, heart, lungs, stomach, swelling, potassium, hormone replacement. To be able to sleep, for pain and etc.

I have zero luck obtaining my disabilty benefits. Although it is in final consideration in Virginia. And my congressmen are trying to help me.

I would dearly love some feedback- Does anyone else have to take this many medicaitons.
I was on predinsone for along time, but am off now. Has anyone experienced liver problems? Now my liver panels are out of whack- especially my LDH ( this is not cholesterol). My blood counts are coming up whacky. I have to go this week and have more tests done.

If any one has complied a list of the wide variety of symptoms that occur with this disease please let me know. Also, Any opinions on how to approach this doctor, without making my own diagnosis. But getting him to consider this without being too opionated, I am a retired nurse and Doctors hate this
Thanks Cherry