Hello. I am a 30 year old female who has been mostly healthy my whole life (aside from bad asthma and frequent colds, chronic sinus infections) until 5 months ago.
I started getting terrible headaches behind my eyes, pain burning and numbness in my arms and legs sometimes very severe, constant nausea, constipation, bouts of vomiting, weight loss, extreme exhaustion, some confusion, some tremors, (maybe from lack of food I now realize) and granuloma growths on my face (that started about 1 year ago). I should say that before this I have never had any of these symptoms. The pain in my head is somewhat better now which is good.
I thought at first it was a bad sinus infection, CT scan showed significant infection and polyps, but antibiotics and prednisone cleared it u quite a bit and 3 ENTs told me I definately had another problem going on.
So I eventually ended up in the hospital after doctors saw me loose so much weight. I had an MRI of my brain and back that were normal, EEG and EKG normal (less mitro valve prolapse). Chest x ray normal. Spinal Tap was normal. I had lots of blood tests: the whole infectious disease workup came back normal (including lymes, etc), my sed rate, c-reactive protien, ANCA all were normal. They had at one point thought it was Churg-Strauss, a rare form of vasculitus, but ruled it out b/c of these tests.
The abnormalities that have come up are slightly below normal white and red blood count consistently, high mcv and high mch (but no anemia). My eosinophiles are also high (I think this can be from allergies?) I have catiracs in my eyes which is very strange (and didnt have 1 1/2 years ago) My vitamin D is low, alkaline phosphate is low. My rhumetological workup showed low C4, but all other normal tests, for lupus, etc. I had blood tests from GI doctor, which came back negative. He wants to do the tube in my stomach, take biopsies and do CT scans of my stomach but havent done that yet.
I had a biopsy of one of the growths on my face that reported it was probably necrobiotic xanthogranuloma, a very rare disesase. Sarcoidosis was a possible alternative, but no one thinks I have this b/c my lungs are clear and my blood tests are negative and apparently this never happens? I had bloodwork done that showed no paraproteinemia, which 80% of the cases of necrobiotic granuloma have. So I am sending slides of the biopsy to NIH for a second opinion.
I am going to a chiropractor 3 times a week, was going to acupuncture but can't drive anymore (and wasnt getting relief as I usually do with acupuncture) so stopped. I eat really well (except with this when I am too nauscious or throw up). I had my hair tested for heavy metals and it showed some burdens, but my osteopath told me that there was also another disease process going on and I needed a diagnosis. So I have started chelation treatments, but just enough to get a urine test to see what my heavy metal burden really is. After my second chelation, I was violently sick for 2 days, which apparently never happens. I think it may be from whatever is wrong with my stomach, but I am afraid to get more chelation. At least I will know how much heavy metal toxcicity I have.
I cannot drive because I have some blurry vision issues (maybe from catiracks, or maybe from another granuloma growing in my eye socket). I am trying to still work and I have a job with a lot of responsibilities, if I dont work I cant give the work to someone else -but it is very difficult with all of the pain and exhaustion. And disability has been hard to get because of no diagnosis. I have a very hard time sleeping with the pain, am so exhausted that I barely get out of bed, and have bouts of barely being able to walk because of the pain/numbness in my legs. My body has also felt like it s a dead weight and I get muscle weakness.
I generally have a good attitude, but when I am in so much pain and when I am unable to function for weeks, months it gets to be really hard.
I just wanted to put this out there to see if anyone has any insight or suggestions.