I hope I'm posting this in the right place. I have been telling my story to every type specialist in the books until now. I'm praying my new docs are on the right track.
I've been so sick I was close to going into Hospice 4 yrs. ago. I have been to numerous rheumatologists and no one wanted to put the Vasculitis stamp on my disease. Started in 2001 with septicemia, then went out to have a gram negative germ that Inf. dis. Unit said they had never seen before and were going to send it to CDC. they never did, 2 yrs later adter battling fatigue, vomiting, nausea, fevers, eye and head pain, bleeds behind the eyes, loss of vision, horrific muscle spasms, joint pain, abdominal pain and I could go on, but that's enough for one day. I was put on high doses of prednisones and cytoxan which is a chemo drug. My sed rate jumps to 110 without the prednsone. My BP also rises to dangerous levels, 206/125, Heart rises to over 120-150 and I'm in serious trouble. The only thing that took it down was the prednisone.They have torn me apart with numerous biopsies, temporal artery, liver, mouth, lung. Each showed inflammation, the lung biopsy had the pathologists baffled as they said there was evidence of bronchiolitis and obliterating pneumonia, but they couldn't make that dx as it is usually seen in the lower lobes and mine was seen in the upper. They even sent it for dept. review and every doc has been baffled. I had to change PCP's due to my long time doc leaving and it seems the new doc ran the Vit D levels and found they were down to only 5, so he promptly ordered me 50,000 units a week? Then on to a Neuro Opthamologist who took 40 vials of blood last week.there he found high levels of fibrinogen and I want to say my CPN level was 1024. He said it was way out there. He put me on Azithromycin 250 BID. I have also suffered from serious eye infections since they touched my left eye for cataract surgery in April. I had Iritis and Vitrous separation and am now told neuritis. I am now also diabetic from all the weight and prednisone. I didn't ask the Neuro Op guy too much as I think after so much suffering I was glad someone said there was something seriously wrong with me and is paying attention. I also was afraid of adding anything to what he is saying to not throw him off track. he's still researching and putting all of the strange symptoms and records together to come up with a good diagnosis. I ran myself ragged for thes past 8 yrs. with docs, tests and reading everything I could get my hands on.
I have alot of questions like am I contagious with this CPN? Is it an old STD? Can I pass it to my daughter in law who is expecting? Is there anyone else out there who has had autoimmune similar to mine? They did say early on I most likely have Fibro also and they threw the Lupus and Sarcoid idea around too after looking at CT scans of my lungs, as they show Interstitial lung disease. That is it for today, I don't want to confuse people, I want to share my story as I am praying this will be the answer I have been searching for for yrs. I welcome any input suggestions from anyone who has ideas or anything to add to my Oddessy.