I'm a 33yr old male who a few months ago started to have unexplained chest pain, swollen ankle, facial pain, ear aches, numb fingers, and headaches. Since the initial chest pain I lost my appetite and lost 40 pounds of weight. After many doctor visits and a cardiac cath that came back clean I still had no answers. Since my cardiac cath in December my pain and weakness has become more extreme. I had a 5 day stay in the hospital with no answers. Then a few weeks later I was admitted for dehydration for 8 days and had a upper GI and cardiac workup done again during the stay. I was told I have anxiety, and in a round about way told to relax then sent home. My main complaints at the time was severe chest pain, hard to swallow food, and at times short of breath. I also developed bradycardia during this stay. After seeing a rheumatologist at the Mayo clinic (Scottsdale) I was told I tested positive for WG. My cANCA test was positive with a titer of 1:4 and a positive PR3 of 4.8. My sed rate was 26. My urinalysis was normal. On CT and MRI of my sinuses showed mild linear fibrosis in both lower lobes. Also mucosal thickening of left maxillary sinus.
After complaints of shortness of breath I was admitted into the Mayo Hospital. I was there for 5 days and had the so called "Mayo Work up", though I feel my lungs were not looked into fully. Being that by profession, I'm a Respiratory Therapist, I feel A MRI versus a CT of my lungs would have been better. I also feel my trachea and the sensation of it being swollen to me was ignored, also my low oxygen saturation was ignored.
After the 5 day stay I was told the tissue biopsy of my sinus was clear and had no WG present in my sinus. The MRI report on my ankle sugested that it was swollen and damaged from Vasculitis. I also was seen by a Optomologist while there who suggested that my pre-existing Glaucoma and Uveitis of 1 year is the results of vasculitis. I have a shunt in my right eye to relieve my ocular pressure. Not to get side tracked but I developed this glaucoma out of no where and it came on fast.
After my 5 day stay I was told by the attending that since my tissue biopsy of my sinus is negetive for WG and that my c-ANCA blood work is lower now that I was being discharged. I had a spinal tap and many MRIs of my head ordered by the Neurologist to figure out why I have headaches. All of them came back ok. I was not told how much lower nor have a seen the lab results for myself yet of the "lower" c-ANCA test. She agreed that my symptoms were real but could not give anymore explanation of why I was not going to have other biopsies done, such as my lungs, nor anymore blood work to see if the cANCA was re-elavated. They discharged me on with prescriptions for Celexa, Ativan, Roxicodone, and Augmentine. So here I sit back to square one. I have severe chest pain, shortness of breath, pounding head, facial pain, ear aches, hard to swallow, hands are numb ect.
This has taken it's toll on me and my family physically , emotionaly and finacially. Please help me! I have a Wife and a 8 yr old boy whom I'm not ready to leave yet. If you know of any good docs please help me out. Im from the Pheonix AZ area but now staying up north in the Kingman area. Any in AZ, NV, southern Utah, CA, ect any and all info will be a great help to me.
Thank you
Joshua
Bookmarks