I posted this on the MS board. I apologize about the length. I am a 35 y/o female.
I started having some pain in my knees and back in high school, but I was a very active (and in shape) athlete. For the most part, I overlooked these and attributed the back pain to having large breasts. When I got pregnant the first time, I had severe pain and ultimately miscarried that pregnancy and two others (one after my live childbirths). I delivered a healthy full-term DS when I was 21. This was after self-diagnosing a hormone deficiency and insisting that I be put on progesterone for that pregnancy (and the subsequent successful one). I did gain almost 90 lbs when I was pregnant because my pain and pregnancy problems worsened. I had a second DS full-term at 25.
About two years before this (around 23), my pain was worsening, so the doctors put me on antidepressants and told me to eat right and exercise, but I was having trouble even walking very far and already ate a very healthy, low-fat, low-cholesterol, low-sodium diet. I have had high-cholesterol despite this since my early 20s. Finally at around 24, I was diagnosed with hypothyroidism and put on Synthroid until right after I delievered the second DS, when I was told that my thyroid had "corrected itself" and I no longer needed the medication.
I spent the next three years having what seemed to be a relapsing-remitting chronic pain problem, with additional problems with my vision (floaters and occasional blurriness, sensitivity to light, spasms where my eye "jumps"). I also had a LOT of gynecological problems (since menses, painful, heavy, or irregular). At 26, I was diagnosed with PCOS (later told that was incorrect by an endocrinologist because the gynecologist had made the diagnosis without confirming high testosterone) and had surgery to laser ablate (?) multiple small (pin-head sized) ovarian cysts and some adhesions and was then put on a 7 month course of Lupron (used as a treatment for endometriosis, though I wasn't diagnosed with that then).
I had my third miscarriage at 28 and then spent a 1 1/2 yrs suffering through occasional bouts of pain (mainly gyn) but unable to see a doctor because I didn't have insurance. My mother died at 48 from ALS during this time. This seemed to have been a remission phase for me because if I had bouts of pain or problems, they didn't last long. At 30, I was in the best shape of my adult life and completed a half-marathon and sprint triathlon.
At 31, I began to have worse problems--problems with distinct bone, joint, nerve, and muscle pain; problems where my foot would occasional "drag" esp. when I was tired; worsening eye problems; heart palpitations and chest pain; stomach problems--bouts of diahrea & constipation; bladder problems--starting, going frequently, stress incontinence; Sphincter of Oddi Dysfunction (which was originally misdiagnosed & they took out my gall bladder--and I have subsequently had this again this year and had it corrected through a second sphincterotomy--a doctor actually got onto me because it was after seeing an episode of "Mystery Diagnosis" that I requested to have the SOD checked. She said that I wasn't a doctor and needed to stop looking at the internet and TV and trying to diagnose myself, which was hard because I was in graduate school working on an MSW.). I was also diagnosed with Narcolepsy and Sleep Apnea that year (and this year told that I do not have Narcolepsy).
I began to have more neurological problems, including occasional slurred speech, mispronounced words that I knew, couldn't think of common words or lost my train of thought in the middle of speaking, my memory went to crap (to where I could no longer continue in graduate school), and I occasionally even forgot where I was.
I have had my thyroid checked several times, and it is always barely within (but within) the normal range, my thyroid antibodies were borderline, so I was told that it is not a thyroid problem, and besides, I still have neurological symptoms. I do have a multinodular goiter (with some solid and complex nodules--but the ENT Dr. that I saw yesterday says I don't need a biopsy/FNA). My husband believes it is Hashimoto's Encephalopathy, and I think it's possible MS with subclinical hypothyroidism. The Internist I was referred to says that my antibodies would be higher if it were Hashi's.
Oh, other symptoms include restless leg syndrome (4-5 years now), painful muscle spasms and sometimes "charley horse-type pain" (mainly in arms and legs, sometimes in feet), carpometacarpal joint pain (told it's not carpotunnel), what seems to be peripheral neuropathy in my hands and feet (pins and needles, sharp pains, and even the inability to even touch ANYTHING--like my husband's skin--without it hurting), I know there are other things, but I can't think of them now.
Had a hysterectomy (uterus and cervix) at 32. After lots of testing, at 32, I was diagnosed with fibromyalgia and arthritis/bursitis, when RF, ANA, and MRI without contrast came back negative. I felt better off-and-on from mid-33 to mid-34, other than having to have both my ovaries and tubes removed due to multiple cysts and severe endometriosis (actual diagnosis that time). I had a great dr for about 7 months, but in the Army, that is always changing. He had planned to send me to the Mayo Clinic or do a spinal tap if there was no diagnosis by September 2010. He left in June, and the next doctor told me to lose weight (although I had lost 60 lbs while I was in a remission) & exercise and I would feel better. He agreed with me that it wasn't just Fibromyalgia and said it was a result of depression (my depression actually gets worse when I am in a relapse or flare and STILL don't have a diagnosis).
Jump forward to a few months ago, as I refused to see that Dr and just didn't go for 6 months or so, but I actually also felt better during that time (another remission). I start flaring again (relapse?) and things are worse. My husband had to be gone for long-term training, and I was able to use that (& that I couldn't drive so far to see the bad Dr) to get reassigned on post, but in a family medicine clinic with my PCM being a nurse practicioner who feels that if I just eat a vegan diet, everything will correct itself. She refused any referrals; she is out temporary duty so her replacement referred me to the on-post internist, where the Dr told me he didn't think he could find a diagnosis and fibromyalgia fit best, but he has at least had some tests done. He won't do anymore blood work, as he feels I have been given the complete workup by my previous good Dr. Previously told I had Celiac because one of my blood tests was high, but the other was normal, and after going Gluten Free for over a year, I was told that I do NOT have Celiac (and after another biopsy). (Tricare refuses to send me off-post to see any specialist.)
My pain is worse--more intense, more frequent--new symptoms appear and old ones that just hadn't been that bad or present for a while worsen--my foot drag is frequent enough to take note of it and I have periods when I cannot walk and have to be in a wheelchair after too much activity or standing for too long. I've had headaches every day for the past month, with off-and-on migraines, which is why the Internist decided to refer me for an MRI.
I have recently gotten back the borderline low or high thyroid tests and antibody tests, but as far as I know even a thyroid problem that was diagnosed wouldn't explain all the neurological problems. I had a brain MRI (without contrast--don't know what type of machine, it's in an Army hospital) and the report says that everything is unremarkable. I am starting to doubt the reality of my pain since so many medical professionals have. I want a viable diagnosis so I can get treatment and know what I am dealing with. Almost everything obscure was ruled out by the one good Dr--porphyria, etc. Thanks for "listening" to me.