- CASE FILE
i'm a medical mystery/should be a poster child for your show..on aza, steroids, mitigaire..I'm 46 and this has been going on for over 10
ABOUT THIS CASE FILE
I was in ticks nest in 2006 got very sick put on doxy for 7 days..in 2007 hit my left side (facial pain, ankles, wrists, bone pain, facial pain) did the run around went into rimmission back did run around 2009..went into remission did run around 2012..since 2015 have went down hill...treated me for a year on doxy..helped the eating at my joints BUT now they feel it turned into something else..symptoms have gotten much worse..I am wearing diapers...I was very althetic up until Feb of this year..I would still walk 3-5 miles a day...I can't wear my sneakers...i'm icing my knees and ankles every night for the last 4 weeks...NEVER knew I had swelling before now I have swelling that is very noticeable...not red, hot or painful...BUT I have pain in the joints, weakness in the hands, legs, falling, i loose control of my bladder and have no idea...I get confused and have no idea where I am....I am losing my vision, my hearing...until the doc starting actually seeing the sores in my ears and I was bleeding out of 1 ear...finally...i have had infectious disease say 100% MS...I have the bands they found in spinal tap; neurology 100% not ms...being treated now for some unknown autoimmune/auto inflammatory condition. It has hit ALL of my organs...I have been to EVERY ologist there is...there is a lot going on here and no one knows what to do...how to treat..I keep hearing it is a "SYSTEMIC" issue or it's noting coming from here but it is affecting it. I was 118 pounds..because of the steroids..I don't recognize myself...I'm 155-160 lbs... I was diagnosed with polychondritus; reynauds, neuropathy, incontinence, mild cognitive impairment (formally tested)..being treated 250mg AZAthaprine, (o.6 mitigaire), down to 40mg prethazone, gabapentin about 1800-2400mg,.....I need a whole ateam of docs to slow the progression down...my vision...I'm going blind when I have my "episodes", losing my hearing, can't walk, bruising, up the spine..losing my hearing...I am high energy...I get these fatigue spells that are awful; (can barely walk my dog)..sores mouth, ears, feet arms....mitigare is definitely helping..I feel the AZA might be...I have burning of the skin which I have been on gabapentin since 2009 which helps that... I own a business and work on commission..which I am trying to keep up with that...and if that isn't enough my home burnt down March 24th this year of a freak fire and I lost my 2 cats and everything i own..I tried to save them and ran in 4-5 times but couldn't get through the smoke...I am so frustrated with the doctors Because I am NOT a complainer nor do I have the time to run to all of these docs...so when I been ding the run around for all of these years it has been for a reason...and for it to get this far and the symptoms are worse, I can't walk anymore like I used to..I have to wear a diaper, I'm fat...I am completely digusted and I sw your show and everyone keeps saying to contact you BUT I also read you really don't find the cure...I contact mayo clinic; spent over an hour with my tests and everything only to be told the wait is over 1 1/2 years and they aren't adding anyone....the one thing is that most docs are in agreement at this point that 1 NOT lyme disease morphed into some kind of rare auto immune and/or auto inflammatory condition...BUT my patience is running really low...because someone has to slow the progression of WHATEVER this is...CAN YOU HELP??????????????????????????????? My dog is what gets me up every day and all of my responsibilities... They were sending me to MD to the government center in Dec for "RARE DISEASES" I have had pretty much every test...2015 when they found the oliclonal bands in spinal fluid...then I tripped the lupus test with speckled pattern...I DON'T have LUPUS...I have been tested for everything...I just did a cystogram CT on Friday and that genius saw me in 2016 sent me to neurology..the only reason why I went back to him is because I had the same issues then before i was put on medication in JAN and don't want to hear stupid answers..like"it's from the steroids" plus they are just more frequent and neurology and rheumatology wanted a full workup...I have itching "episodes"all over my body like bugs are biting me...I have a 2nd condition polythecemia...BUT I am a smoker...neurology feels the neurological issues are secondary to primary cause...BUT doing nothing to slow down the neurological issues..the heart doc..told me I am going to "suffer" for the rest of my life and that's exactly how I feel...if you told me I had cancer..it wouldn't phase me...BUT be a MEDICAL MYSTERY..I am NOT an ALIEN! there has to be an answer to what is causing this and how to get me better instead i'm getting worse...any help is much appreciated.