- CASE FILE
43 y/o F, disfiguring skin lesions x 3 yrs. 6 MDs & each diagnosed self harm or delusional parasites. NO TEST by any MD. Used shape to dx
ABOUT THIS CASE FILE
(Rash ties in later) From 5 years old my extremities were always falling asleep. Each day my feet and forehands would go numb whether sitting at school or the movies are where I remember it the most. I then Became a Nurse and started working nights and all symptoms got much worse. I started at my general practitioner complaining of (with my medical background) what sounded to me like Multiple Sclerosis (MS). After negative brain MRI at 23 years I was treated for Lymes, don't think I tested positive don't remember tick bite but live in wooded area with pets. 6 weeks on doxycycline without improvement. Then I was told I had fibromyalgia and given cyclobenzaprine which helped if I took it after my shift, but wasn't a realistic ongoing treatment plan. The negative side effects if being so tired made me choose the lesser of two evils, pain Over the years and after each child was born the symptoms returned worse. More MRI with questionable results I never could get a clear answer about. The brain MRI showed something o think she said dots of white that were most likely normal and always there or from an injury but not MS. Go to neurologist 2 years later after next delivery of 2nd of 3 child. Another brain mri to compare. At My follow up appointment found my doctor himself was in the ER with chest pain. They said wait he would be back. Finally when he arrived he told me despite many calls to the hospital my results still had bot been confirmed. My report stated "known MS patient with MRI for comparison with no new changes." Clearly I'm not known to have MS and no new changes? Was there evidence of MS? While sitting in his office about to lose it at how unprofessional for the radiologist to not return the neurologists calls for clarification, the radiologist called. He apologised and said it was a mistake to have said "known ms patient" and my doctor accepted that answer. He didnt probe and ask why he thought so. was there evidence if MS to have made him think so? And what about the white spots my general practitioner laughed off years ago? He said if he said he was wrong then that .ea s you're fine. During this visit I saw My TSH (thyroid stimulating hormone) which should be less than 3 (old parameters say less than 5) was 7. I asked him about the possibility of hypothyroid and maybe causing symptoms. He said NO and then asked with a nasty tone if I was hypochontriac? I said I was a nurse and just understood more and was. Better equiped to look for answers. Plus I was aware that my mom and her mom were diagnosed with hypothyroid in their 40s. Antibody negative hypothyroid which to my understanding is rare and accounts for around 1 percent of hypothyroid patients. Regardless during my next pregnancy my TSH was still around 7 or 8 and I was promptly started on synthroid. Then I was taken off after saying it was pregnancy induced. Follow up had my tsh at 6 and so I wasn't restarted despite new evidence suggesting less than 3 is. Est considering my dmfanilial history. But couldn't get that script. Decided I'll live with my neuropathic pains and odd symptoms as they pop up and I am DONE with doctors. I felt betrayed by my very profession. But who knew it was GOING to get WAY WORSE. ONE SUMMER working per diem on a cancer floor I cared a pt from another country with a severely infected tumor, that summer I also: planted my garden, pulled 4 tickets from my chihuahua, (cant Make this up) was bitten by a feral kitten in Dominican Republic and swam in a lake in Georgia during a heat wave when temp of lake high 90s. In October lesions started to appear on my legs and rear. Slow healing lesions that blead a dark purple blood for long periods, the blood was murky and had speckles of matter in it. Each lesion were identical in shape like a tear drop with a black speck in the center. The black speck migrates to the side and a new lesion spawns to the side. If black speck is picked out you can slow progression sometimes heal a lesion. So picking at them helped them heal as long as good hand washing because otherwise they grew under my finger nails. All doctors said same self inflicted. No testing was done and based on the shape of lesions alone each proclaimed their smarts and said I was picking my skin causing them to develop. I was given referrals for psych. My first visit to GP gave me cortisone seemed to initially make it better then bam way worse. I then saw 3 dermatologists. None even touched me and all seemed annoyed with my visit. One prescribed a steroid my insurance wouldn't cover. He wouldn't change it when the pharmacy called and said to simply leave them be and they will go away. . The next an NP my husband demanded I see, this guy rolled his eyes when I refused steroids and asked for more in depth eval when after one second he was writing for cortisone even though I told him it hasn't worked but seemed to make them worse. "Let me guess you're a Nurse" never so insulted. Instantly started to cry. He hands me my cortisone and I walk out without it. My next doctor was a infectious disease md. And boy did I get a full eval here. I was tested and prodded. I got to watch the doctor teach his new person draw blood, only to be informed proudly from him found out his new wife from another country and wasn't licensed in anything. After blood she returned to culture a lesion. That went like this. I helped her open the tube because she couldn't figure it out, and then took the applicator and rubbed gently one dry scab twice and placed the applicator back into gel. I said you can't send that. You need goop I told her. She smiled. And left. I was then summoned for my echocardogram (?!?), and witnessed her writing my name on the tube in the lab section and another smile, I knew she was proudly sending off her collected specimen with her tail feathers spread wide, walked like a Fordham road pigeon to the lab drop box and came back to the lab in a full moon walk, ok.. ok....but that's how I remember it. No one would listen. Then I had and pelvic and abdominal U/S, yup... Then doppler U/S of everywhere blood flowed. Spirometry which o knew I failed immediately when princesses smile faded and had me redo the test multiple times o ly to realize each one gir worse. I let herearn this lesson the hard way, as I nearly passed out. 10 vials of blood and fi ay some Urine. Results: lesions negative. DUH. ALL OTHER TESTING NORMAL . Except Spirometry. Which he said was only slightly low and I think that nu.ber was 70 something percent. But according to this doc I was fine and just anxious. 120 1 mg ativan pills rx'ed. Next md was derm same outcome. No touch, psych eval. Husband came along for this visit as he didn't believe what I was telling him. When he gave me the stop touching cure my husband said what about a test of some sort. Some sound medical evidence. That's when the shape and how his 3 years of practice have gifted him the gift of medical eagle eye more commonly known as prowess---- to dx by visual inspection alone. Left there in tears. Next up...endocrine to see if hypothyroid was back and the cause. This dr was in same practice as derm NP and he read the notes. So upon entering my room he gave me a speech about trust and doctor shopping, I was so done. I could not believe my ears. Am I NOT allowed to be my own advocate? Why is no one doing tests? By this time almost 2 years have passed. And all my symptoms were working together to kill me. All my years of MS like symptoms were worse. My legs and hands had lost muscle mass and foot drop setting in. I lost my job for lateness and absenteeism. I would sleep on my lunch. Now i had no insurance and another year goes by. During this time My own research and detective work found antifungals helped but never made it 100 percent go away. Boric acid was most helpful as were bleach baths. But not 100 percent effective. And vaseline also was helpful. But what was most noticable was when I went on vacation it almost always cleared. Feeding accusations of crazy. See take vacation all gets better. Comingvhone with One or two lesions to the normal 20. Then slowly they return. My house seems to be involved in some way. As evidence by all of the family has had one or two lesions. Not like me though. Not covered. House: We had a flood a year before this started and had curtain drains and sump pumps put in basement without another thought. But by this time My husband jumped fences and believes doctors. Refuses to have house tested for mold. As a child I had allergy skin tests and the doctors reaction to my mold and spores test was all I remember hin saying it was so big it covered the entire test area. So one may think this could be correlated considering my clear mold sensitivity and yearly allergies in mid July. Example a sugar drink was left on a counter for 24 hours and thick layer if furry mold grows. I tell husband that is not normal and he says in is in your head. I'm at my wits end. I dont trust any medical professional to do the right thing. My life is a mess. I'm either in bed or if up I am ambulating with a cane but my weak hands aren't allowing this much. And about 2 months ago looking at family album I noticed similarities to myself and my mother's brother, he was always in a wheel chair as I remembered. I never knew what caused this. When I asked I found he had Charcot Marie Tooth. I researched and not only do I have every symptom so does my mom and her mom (maybe CMTX): inverted champagne legs, weak ankles that give out, cold feet, neuropathy, excessive sweating, swelling in ankle since childhood if on feet too long (venous insufficiency from poor muscle contraction), flat feet as a child and as a young adult I now have high arches and what seems to be stress fractures on outer aspect of feet swelling bruising and palpable lumps, chronic heel pain similar to description of plantar fasciitis, baker cysts, hip pain, failed spirometry, hearing loss that actually kept me from police academy, thenar hand muscles disappeared in my left hand-dominant hand, hand cramping with any use, claw hands, sleep apnea according to husband, terrible heartburn, incontinence, exhaustion, sleep issues, born with congenital talipes equinovarus (CTEV) or club foot, which can be a precorsor of cmt, wore braces for a year. So do I have lymes which exacerbated possible cmt if I even have cmt. Do I have a mold allergy and mold issue? Am I way off? Could it be from the cat on vacation in DR or the gardening? Or the boys infected tumor? Or am I nutz. I need help. No doctors take me seriously. I'm so psychologically beaten down I don't even know whom to go to first at this point. Or whom to trust. Please help me. Where should I start. It always seems that I allow the doctor to do their exam but when and if I make suggestions at the end they become defensive --that I question them or ask for other tests-- and I then get spoken down to and made to feel crazy. I need a diagnosis. My 3 young kids only know suck tired mommy. Help me get my life back for bot only me but my 3 kids that deserve better. Not a mom on Ativan and serving Chinese food or pizza. Not to mention my income kiss amd the burden it has put on my husband and the stress that is causing him is negatively affecting his health and his family blamed lazy crazy me that made a choice to be this way.