Discussions By Condition: I cannot get a diagnosis.

Skin lesions, neurological changes, endocrine issues, etc.

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: CourteousKitsch
  • December 17, 2013
  • 00:11 PM

I have been trying to get help for almost 3 years now. Bear with me, this will be quite comprehensive and long...
It's incredibly frustrating, inane, and almost makes me paranoid. Except for a young infectious disease doctor who follows me, and my long-suffering psychiatrist husband, just about everyone else has concluded (upon ~2-5 minutes visual exam) that I am, well, neurotic, and nothing else. Okay, "everyone" means 4 dermatologists I have seen. Two family practitioners have been...indulgent...but not helpful at all.

I'm going to give you a bit of my ongoing notes; maybe there is a recognizable pattern.
History prior to onset of current complaint:
PCOS, thyroid cyst/goiter, possible pituitary tumor. Adrenal tumor suspected in 2006 due to cortisol and other labs, but ruled out re: MRI
PCOS treated with hormones (birth control pills) and spironolactone, but weren't well tolerated, so discontinued. No other follow up.
However, at that time, I was quite healthy, athletic, taught/practiced dance ~20 hrs per week and worked out in gym another 15 hrs per week. Height 5'8" and weight 120-130. Had been on the portly side a few years before, after my second child was born.
At that time (2009-2010) I took some medications to help even out my general state. I've always a weird body clock, familial narcolepsy, and low-grade anxiety, but a regime of light Topamax, some ADD meds, and clonazepam PRN in the evenings did the trick. I felt incredible.
Wisdom teeth removed in 2010 with general anesthetic, near the time of conceiving child #3. Had some complications, hypoglycemia, dry socket... Front upper incisors receiving much pressure before this, some TMJ as well, but >50% relief after surgery.
However, post wisdom teeth removal, I never felt quite right. I was pregnant, too, and discontinued most medication (still took a little Vyvanse so I didn't sleep all day). But mood swings were terrible and I gained 100 pounds. I also had borderline preeclampsia with lots of swelling in the last two months. This was discounted by OB-GYN.
After my third C-section delivery, almost everything was fine. My energy levels were pretty good, I was losing weight appropriately, but I bled vaginally for 3 months (OB was not concerned) and had weird painful little lesions in my nose and genitals (like warts or herpes, respectively) upon leaving hospital. They took a few months to resolve.
About in my 4th month postpartum, midsummer, I had a day where I felt like I caught mononucleosis or a really bad flu. Within the same weekend, I got a strange pus-filled (greenish) lesion on my right eyebrow. I drained it and treated it with salicylic acid, and it dried up over a few days. Other things that happened that same month:
-Discovered our historic (150 y.o.) was full of mold due to a faulty AC install. This was not really fixed.
-Had relatives and their pets visit, one of whom was DX'ed with Lyme right after the visit.
-Sewer drain in basement overflowed for the 3rd or 4th time in 2 yrs due to tree roots. Much exposure due to having laundry stuff down there. I do the laundry, lol.
-We had intermittent sewer gas leak because of cruddy plumbing in old house, to make a long story short. The stench would be massive and sometimes I'd pass out and baby would sleep a long time. This was scary. We moved after a few months, even let the bank foreclose.
I began teaching dance again, but I felt terrible, short of breath, and stupid. My eyes would burn and itch all day at my house,and I could hardly read. I'd walk my kids to school (about a mile) and have to rest twice before I could get home.
Before long, I started to really deteriorate. Dizzy spells, random incontinence, weak feet/legs etc., I couldn't concentrate enough to pay the bills, the idea of making a phone call was traumatizing, eyes never working right, sleep became a mess--worse than ever in my life.
Started getting throat/neck stiffness as well. Also great hair loss at temples, supplanted by vellus (lanugo) hair. First saw my endocrinologist who had diagnosed my large thyroid cysts. He saw that my thyroid (swellings) had doubled in size in 16 months, biopsy inconclusive, but recommended at least partial thyroidectomy. However, he also saw my reaction to thyroid prodding (palpation)--(stiffness, tongue swelling and white lesions near throat, agitation and tachycardia) and basically concluded that I was neurotic. By this time I had at least mild tachycardia (high heart rate), was feeling anxious....when I was alert; no longer could work out or dance, extreme fatigue most of the time...I started taking baseline Synthroid " to keep the thyroid lesions down" and aldactone or a cognate drug, I forget which. My hair grew back somewhat, but not much else improved.
At that point, I even saw a neurology resident to consider MS, since it runs in my family. He conclude after 1/2 hr. that I had some " unctional weakness" due to lethargy, no more. Ok, great. My skin was getting really weird now, lesions that looked like acne to start, mostly under my ear and my neck, but no "pus" and it would never quite heal. Just felt hungover all the time, too. Stupid, airhead, dizzy, crabby....
Soon, due to a high fever, very stiff neck, fainting with incontinence, etc., I went to the ER. Waste of time. I thought maybe I had meningitis or something similar; I got the resident very excited with my symptoms and labs (i.e., I was rhabdo upon admission) but the supervising MD shot her down and I got sent home a few hrs later.
2 months later I scheduled the (partial?) thyroidectomy, got prepped, but was sent home by the surgeon due to my (by now) really gross, ugly, broad skin ulcers around my face and neck. I still have never gotten my thyroid treated surgically, because of that. It kind of looks like really bad impetigo mixed with cold sores and seed warts. I don't know how else to describe it in a nutshell, though I can give more detail upon inquiry.
Fast forward 2 years. I still have had no thyroid surgery. I take a small amount of Armour thyroid and Vyvanse (I have gone off the latter for two months at a time, my choice, to rule out stimulant-based skin changes). I have been dx'ed with reactive arthritis, cause unknown. I take a bit of hydrocodone when I've begged for it long enough; I've been thru at least half a dozen rounds of prednisone and now I look like Roseanne, yay. I'm 4 months pregnant again (serious surprise, I must be more fertile than Eve, all things considered) and big as a house already. I shuffle around like I'm 80, and I can hardly see straight let alone think. Just want to sleep.
Beginning to think I do not have an infectious or hormonal problem, at least as primary ( I have to do all my own research--tons of fun now that I'm stupid) but am considering seriously a kidney disorder. I am 35 years old now but I feel like I want to die. I'm almost totally nonfunctional. Look up Kyrle's disease, that's what my skin looks like. My new OB-GYN (practice) sees for 4 minutes per visit and is unconcerned... I am scarred now from head to toe (literally, one of the worst lesions is one a toe, but I can't go into that now) and the open sores look a lot like this:


This is what half my face looks like, my forearms, my breast, my shins, my back, my feet. Oh, yeah, forgot to mention, I get these sores in my mouth too.
As I said, I have a young infectious disease doctor who is trying to help me out, even if it's not infectious, he says--nobody else will. I can post some lab stuff later, as well as other history/genetic info.

Does this sound familiar to anyone? I'm tired of being treated like I'm just crazy (though I'm getting there), some borderline wanting attention. Nothing could be farther from the truth, What should I do next?

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3 Replies:

  • A lot of your symptoms sound like Lyme disease. Have you been tested for it? The normal lab work from a regular MD often comes up negative for Lyme, as their tests are not that sensitive. Igenex has a good test that is more accurate. You should do a Google search on Morgellons disease too. Many people that have Lyme disease also have Morgellons disease as a co-infection. Are you itchy? Having biting/stinging sensations?
    Anonymous 1 Replies
    • February 5, 2014
    • 05:46 AM
    • 0
    Flag this Response
  • A lot of your symptoms sound like Lyme disease. Have you been tested for it? The normal lab work from a regular MD often comes up negative for Lyme, as their tests are not that sensitive. Igenex has a good test that is more accurate. You should do a Google search on Morgellons disease too. Many people that have Lyme disease also have Morgellons disease as a co-infection. Are you itchy? Having biting/stinging sensations?
    Anonymous 1 Replies
    • February 5, 2014
    • 05:46 AM
    • 0
    Flag this Response
  • For three years I am also un diagnosed with bizarre unrelated symptoms. Mine are now life threatening with no diagnosis. I was a healthy person before the onset. Now after pressing the doctors to test my immune system cytokines we finally have an answer. My immune system is dys regulated. Have your th1 and th2 and interlukine-2 levels tested. Interleukins are the hormones of the immune system and can get out of whack for no reason causing crazy symptoms.
    Anonymous 0 Replies Flag this Response
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