Many thanks for the replies and advice
To all who have replied so far, thank you so much. It helps quite a bit. Most of my meds treat only the symptoms, but support treats me. It feels better than a handful of pills, way better.
I wanted to share the story of my journey to this diagnosis. This could take a bit. Most doctors don’t listen to it all, so I would like to write it down for my own peace of mind.
In June 06, I started having stomach pain. It was always on the lower left side and never went away. It would flare between small sharp pain to terribly sharp pain, but it was always there. Repeated doctor visits, negative test results, second opinions, and they eventually said Irritable Bowel Syndrome. Syndrome to me just means that they don’t know what it is but the symptoms look like something they read in a book once. Nothing they ever prescribed for this helped me.
In early Jan 07, I had a chest cold and ran fevers for 4 days. 2 days of no symptoms at all after kicking the cold, then, the fun really started. I noticed that crossing the room jacked up my pulse and made me short of breath. I went to sick call, was told I was okay, and sent home to drink lots of water. To those unfamiliar with military sick call, you are frequently told to drink lots of water and take motrin, or as we call it vitamin M. 1 week after the pulse and breathing problems, my wrists started to hurt enough to keep me up at night. I went back. A nurse practitioner(note: not a doctor) said she was very worried about me and ordered every lab she could think of. She sent me home and told me that if my wife gets so worried that she wants to take me to the ER, Just go! No questions, just go. The joint pain spread and worsened and I gradually became too weak to walk. On Jan 15th, we went and I was admitted. Many doctors, many labs, many imaging studies. All normal. I left diagnosed with possible fibromyalgia, possible POTS, and IBS. I needed a cane to steady myself when walking.
After a month on leave to recover, my joint pain had only worsened. I developed extreme motion sensitivity and orthostatic issues. My other symptoms were not responding to meds either. I was flown to the Naval Hospital in Bethesda, MD. The attending doc there swore I would not leave there diagnosed with 3 things. He was right. I left with 4. They said I had IBS, vitamin d deficiency, post viral dysautonomia, and post viral arthralgia. At least there were finally 2 positive labs. Back home for recovery.
The joint pain began to spread to my neck and lower spine. My spine became tender to the touch. 2 months after the joint pain started, muscular aches and pains started. I felt like a bruise from my hair down to the soles of my feet. Late March, on my daughter’s 16th birthday, I had a flare up of tremendous pain and sudden weakness on my left side. The left leg and arm were colder to the touch than the right. At the end of the first week of April, I began to have burning sensations shooting from my neck down through my fingers and from my lower spine down through my toes. By mid April, I began to experience sharp jabbing random pains all over. I finally saw a neuro who listened to me instead of reading the chart and asking questions that he didn’t let me answer before moving on to something else. He said CIDP.
There you have it. 10 months of problems. 4 months of steep steady decline. 1 diagnosis. Thanks for all of your advice. Here is what I learned on the journey:
1. Always believe that you know your own body better than they know medicine. A doctor’s work is called “practice” for a reason. With any luck, someday they will get it right.
2. If you think they aren’t listening, tell them it pisses you off. They are used to people deferring to their expertise. Years of study are no substitute for years of living in your own skin. I told the man who admitted me in Jan that I thought I had a neurological illness. He thought it was in my head.
3. At all times, remind yourself of this when you get discouraged. Doctors learn for years just so they can make an educated guess more accurately than you or me. Don’t forget that they can’t all have graduated at the top of their class. Someone had to finish last. They don’t print that on their med school diploma.