Hi, I hope someone here can help me. For awhile I was feeling good about the care I was recieving with my family practice dr. now it seems like I have burned him out or am being misdiagnosed.
I have a long story, and at this point I don't know what relates to what, I will briefly explain the past and then focus on right now. I am 32, was a healthy baby, and young child.
5 yrs strange, long lasting illness. Dr.s thought leukemia, never a clear diagnosis
10 yrs diagnosed hypothyroid with goiter, no apparent autoimmune disease
12 yrs hosipitalized with ruptured ovarian cyst, high fever, looked like appendix, did not start cycles until 13.
14 yrs bad case of mono, sick 3 months
15 yrs diagnosed with Lupus (red rash on arms, fatigue, elvated sedrate, reynauds, joint pain) no postive anti-ds-Ana
19 yrs another rheumatologist discounted Lupus dx, says Fibromyalgia
20-28 mildly ill from time to time, gave birth to 6 dc ages 17-28, pregnancies difficult with preterm labor and hyperemisis. Only meds needed are thyroid. Get viral illness very often, low energy, develop bad seasonal allergies. Migraine headaches.
28 yrs begin to have severe joint pain in right knee and right elbow. Bedridden most days. Blood tests show positive rhematoid factor, low complement (c-3) DX is "Complement Deficency syndrome" and/or lupus like disease. Placed on prednisone, low dose, improve. Placed on
plaquenil, continue to improve. Menstrual cycles getting worse.
29-30 become pregnant, severe hyperemesis. Taken off Plaquenil and prednisone. Flare after baby is born, new rheumy says no clinical signs of flare, says DX is "Hypermobility Syndrome". Put back on plaquenil improve after a few months. Start taking motrin, mobi, tramadol, in almost constant joint pain.
31 miscarriage, by a emergency d&c because pregnancy is not naturally expelled and I begin having severely bleeding gums. Platlet count is normal. Become pregnant again (off all meds except thyroid) begin hemmoraghing at 5 wks. Placed on bedrest, hyperemesis drugs begin, progesterone shots) Baby does well, then dies suddenly at 22 weeks of preg. Stillborn. Two weeks later emergency d&c for retained placenta. Hospitalized for severe infection, have allergic reaction to morphine following surgery. Have severe allergic reaction to IV keflex.
Begin to have many problems, joint pain increased, rashes increase, dental problems, develop strange floating spots in eyes(dx atypical occular migraines) do not recover well from infection. Develop chronic sinus infection. Rheumy says I am fine, no signs of any autoimmune disease,DX-"Fibromyalgia/Hypermobility Syndrome" decides no longer need plaquenil. Within a few months joint pain makes it difficult to function, large red plaques appear on my face, ulcer in mouth. Family Practice dr, puts me on prednisone and plaquenil and says he will follow my care from now on. Improve greatly on prednisone but develop a lot of side effects, retained fluid, weight gain, insomnia.
Laporoscopy preformed with tubal ligation (dr. says body too sick to risk another pregnancy, not performing as it should) develop severe, debilitating pelvic pain. Hysterectomy four months later for severe pelvic congestion. Kept ovaries. Do not heal well from surgery.
32 Begin to recover, start having neck spasms, another taper of prednisone clears it up immediately. Severe pain in hips and right side, dr says gallbladder (which was healthy at my hysterectomy) is not functioning removed gallbladder, found to be covered in scar tissue. After surgery still experiance hip pain, dr. says it to be Arthritis, possibly RA. Begin to have trouble typing and writing. Sometimes talking. Begin to have severe spasms in lower back, and another attack of neck spasms. Placed on muscle relaxers and prednisone, great improvement. Joint pain continues, difficult to drive, placed on methotrexate for possible RA.
Increasing problems with numbness, limbs that fall asleep very quickly. Facial numbness, clumsy hands, difficulty talking at times. severe fatigue,headaches, increase in eye symptoms, difficulty swallowing large pills. Had some petichae on fingers in past few weeks, platlets checked out fine. Numbness is worse when driving. Dr.'s now say they don't know what would cause the numbness. It is very frightening to me. I would love if someone could know what it could be, my mind keeps going to MS. I have been having anxiety since losing the baby, and am sure that I could be physically affected by that, but my fear right now is more that something significant is being overlooked. The nurse practioner just put me on another taper of prednisone for severe throat pain, she said it was due to my allergies, it went away the next day. I also have several swollen lymph nodes in my neck. One that my dr. is keeping his eye on because it is hard, it is just over 1 cm right now. Joint pain has improved on the methotrexate. Right now I have slightly low potassium, but regular blood work is fine. A rheumy type amount of bloodwork has not been done recently. I really would like a name(s) for sure of what I have.
Thank you, and sorry for the very, very, long post.