Female Age 40 with three children: Male age 24, Female age 20, Male age 3.
Around age 25, I started having unexplained edema in legs and feet. The edema has been an ongoing daily problem that worsens with heat, humidity, salt intake and the amount of time that I spend standing. Age 30 started diuretic (HCTZ) and have been on diuretic ever since.
Around age 34 my hair started falling out at the root all over my head, not in patches. Hair loss is extreme. I have a fourth of what was there a year ago. As a teen and young adult, I had very thick straight hair. As I aged, my hair became somewhat curly. Then when it started falling out, the texture changed and it became unmanageable, hard to curl and needed the strongest hold hairspray just to keep it in place.
At this same time, the inside of my mouth and tongue became sore as if it were burnt by a hot cup of tea. This feeling comes and goes from day to day but seems to stay more than go anymore. Then the edema spread to my face when I slept at night. I would wake with swollen puffy eyes that stayed swollen for a few hours each day.
Starting at age 37, I had three miscarriages (16-18 weeks gestation), which included two sets of twins and one female with Turner Syndrome.
After the last miscarriage, my normal 28 day cycle with light 4 day periods changed. I now start spotting about day 18 to 21 of my cycle and at day 28 my period is very heavy with large clots. I am currently using progesterone and estrogen compounds since about July 2010 (7 months) with no relief. Also since the last miscarriage, I must push to urinate because it doesn't naturally flow out like it use to and I have internal pain and bleeding with intercourse. Progesterone levels were low at the times of miscarriage and lab results showed Lupus anticoagulant. Therefore, Clomid, progesterone suppositories and aspirin were used and resulted in a full term pregnancy.
More recently, my scalp gets extremely agitated and tingly (not a good kind of tingly). My balance is off, I drop things, draw blanks, can't find the "right word", am fatigue and have memory loss.
I have varicose and spider veins in my legs. My blood pressure has always been low. I have a low cold tolerance and my hands and feet are always cold and clammy. I have been anemic for as long as I can remember. My skin on my entire body is dry and flaky but my face becomes coated with a thick oily film within a few hours of washing it. This isn't your typical oily skin, it's unnaturally oily to the point of almost running off my nose and chin. I have constant acne just below the corners of my mouth. I have severe sinus drainage deep in my throat even with bi-weekly allergy shots for the past 10 years. I have an irregular heart beat and a small heart murmur. Feel as if heart palpitations have worsened in the past few months.
Sister: has Osler Weber Rendu/Hereditary Hemorrhagic Telangiectasia (HHT) cause for her liver transplant and must have ongoing blood transfusions for her low iron
Father: high blood pressure, pancreatitus, degenerate disc disease and diabetic
Mother: Osler Weber Rendu, heart murmur, irregular heart beat, and severe varicose veins in legs
My grandparents: Parkinsons's Disease, Cerebral Hemorrhage, Diabetes
Although my older sister has a confirmed diagnosis of HHT during the time of her liver transplant and there is a 50% chance that a child inherits HHT from it's parents, I have not been tested for HHT since I do not have the telangiectasias in my mouth or nose bleeds. I do however have small red spots on my cheeks that appear to be broken blood vessels and swelling of the legs which are both symptoms of HHT. The HHT foundation explains that, "epistaxis and telangiectasia may be limited or absent in some patients despite a definite risk of PAVM and cerebral abscess." Although it is possible that I have HHT, I don't think this is the explanation since many of my other symptoms are not those of someone with HHT.
My recent MRI of the brain was negative but for sinus infection (now treated).
Celiac and Lupus tests were negative. Lyme Disease negative. Rapid Plasma Reagin was non-reactive. Thyroid was good.
Recent Blood Work Results
Chloride (Cl) (mine was a little high at 108.8mmol/L. Range should be 98.0-107.0)
BA% (mine was a little high at 1.311%. Range should be 0.000 - 1.200)
Creatinine (mine was a little low at 0.69 mg/dl. Range should be 0.7 - 1.2)
MCV (mine was a low at 77.5 fl. Range should be 80.0 - 97.0) Mean corpuscular volume is the average volume of the individual red blood cells. A low MCV indicates the cells are smaller than normal.
MCH (mine was a little low at 24.3 pg. Range should be 27.0 - 31.2) Mean corpuscular hemoglobin (MCH) and mean corpuscular hemoglobin concentration (MCHC) are measures of the amount and volume of hemoglobin in the average cell.
MCHC/Mean Cell Hemoglobin Concentration (mine was a little low at 29.9 g/dl. Range should be 31.8 - 35.4)
EO% eosinophilia (mine was high at 8.23%. Range should be 0.000 - 5.50)
EO# (mine was a little high at 0.617 K/ul. Range should be 0.000 - 0.600)
Iron (mine was a little low at 45 ug/dl. Range should be 50-212)
CHOL/HDL (mine was low at 2.7 mg/dl. Range should be 3.5 - 4.5) HDL stands for high-density lipoprotein. This is good cholesterol, the more you have of it the better.
After bloodwork, I am now taking bi-weekly B-12 shots (mine was low normal). Also multi-vitamin, a skin, hair and nail vitamin, Biotin, Iron, progesterone & estrogen compounds and spirolactone. Nothing has changed but for a little less oily face from the spirolactone.
I have seen a dermatologist and my OBGYN and still no answers. Is there anyone else that has something similar going on with them, I feel a bit alone here . . . Any ideas of what could be causing such an array of symptoms? My doctor who has been wonderful with me and has done so much is out of ideas.
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