That Inexplicable Disease I’ve had for 40 years

When I was seventeen, I started having insane itching spells which produced sores. I began my long search for a cause and cure. Many dermatologist were seen over the last forty years. I’ve been biopsied, scraped, given handfuls of sample creams, steroids, and sent away with no clear diagnosis. This went on year after year.

It never has been so terrible consistently. I would have spells, then periods of time with minor issues. However, this year it has been worse than ever. I’m broken out with sores on my legs, hips, neck, shoulders, arms, hands, chest, and have them throughout my scalp. I’ve had these sores inside my ears, nose and on my lips.

It’s rather embarrassing. I look like a crack addict!

In desperation I went to Newnan dermatolog again in the spring. A biopsy was taken that produced no answers. They said I had a staph infection. I was treated for that and was dismissed from their care. Yeah, they gave up on me. They referred me to a neurologist. I couldn’t get an appointment there before September, so I decided to see if my primary care doc could help.

I am broken out so badly and having many itching spells. These spells are so intense it is maddening. Like a thousand mosquitoe bites! I am up all night, some nights.

Dr. McDonald tried steroids for a week with a steroid cream. He gave me Doxipen to be taken at night.

None of that made a dent, I went back today with more sores, looking tired from so many sleepless nights. He tried Hydroxyzine.

Leave it to me to have a chronic condition that has stumped all my doctors. Just know , when you see me, that I am not on Meth! Just dealing with a disease that apparently, doesn’t exist.

After months of no improvements, Dr. McDonald suggested it was psychosomatic and suggested I see a psychiatrist, and a neurologist. He later told me it was because that was what was suggested in the notes from Newnan Dermatology. He felt like he had done all he could do for me. I left in tears. I knew it was a real condition. These sores did not arise from a neurotic chronic scratching session.

I had to go to Emergency Room, Saturday, November 24th. My lymph nodes were swollen and painful all down my left leg. I had knots in places I was concerned were blood clots. An ultrasound revealed no blood clots But they said I had an infection from a wound. I received non narcotic pain meds. (Yeah, disappointing) and was sent home with antibiotics and Tylenol #3 (Yeah, disappointing.) I was so sick with chills and fever of 102. But in a day or so, antibiitics kicked in. I’ve had migraines every day for a week. I think I may have had a virus. The itching resumed. I was up all night and had to figure this skin thing out.

Out of sheer desperation, I got up the nerve to ask a friend who is also a retired dermatology pathologist. He examined my wounds, asked questions about my medical history. He said it was a real condition. He even named something he thought it might be. He wanted to see my pathology report from my last biopsy. When I sent it to him he said a new biopsy was necessary and referred me to a colleague in Buckhead, Dr. Ganz.

When I called their office to make an appointment I was told she was booked through February. I told them I had hoped to get in sooner as Dr. Lee had spoken so highly of Dr. Ganz. I was put in hold, then told something had become available that Thursday! I was again filled with hope after all these years of suffering, I’d finally get a diagnosis, and treatment plan.

Today I saw Dr Ganz. She was a delight. She seemed certain she could figure this out. I was asked to undress and put on a paper gown. I was donning gown and sitting on the exam table when she entered. She put me through a thorough examination of my sores. I was turning one way, then another, lying down, sitting up. I was flipping around on that exam table like a pig rolling in the mud. Never have I felt so fat and gross. I looked down to see the paper gown around my waist like a big old paper donut! I said, ” Well, this was pretty useless!”

She did a biopsy, and they drew blood. Maybe this will result in some idea of what is happening, and has been, for forty years. Hope is a good thing.

My sister, Brenda, came over and prayed a very heartfelt prayer. The rest of my friends and family have been praying. I am blessed.

2 thoughts on “That Inexplicable Disease I’ve had for 40 years

  1. It hurts to see you in such misery. There has to be an answer! We know you aren’t on meth, lol. But finding an answer for you must be all of our priority..I know you have probably tried everything out there. we will keep looking.

    Like

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