strange mystery problems, 9+ years, in 21 yr old otherwise healthy woman

this post may be a bit long. I will try to make it somewhat brief while including as much as possible.

your input will be appreciated more than I can possibly relay to you over a computer.

I am a 21 year old female. I have been sick for over 9 years and I am desperate to find help. I have been to more doctors than I can count. At 12 I had mono (from drinking after my brother who had it, not kissing ;)) and it seems as though I have never recovered from it. After mono I had to be taken out of school and home-schooled because I STILL could not get out of the bed. My pediatrician told me I was anemic (which is true, I was) and said this combined with me being a "normal teenager" explained why I needed 14-16+ hours of sleep a day. REALLY?! I barely made it through high school- it was literally all I could do to pass with D's. The fatigue never let up. When I was 19 and my ped retired and I went to a normal GP. this doctor was also not helpful. She agreed it was anemia. Just as the ped she told me to continue taking OTC iron supplements- despite the fact that I had been taking them for 7 years and my hemoglobin was always hovering around 10, never higher than 11.

At 20 I went to a new doctor. He put me on RX iron- 700mg a day- and that has brought my hemoglobin up to normal, finally. unfortunately, this made no difference whatsoever in my fatigue. fatigue is my main issue, but I have had many other strange problems, which I will list below. my new doctor really cares, and he has been wonderful, but every test he ran seemed to deepen the mystery. I have been referred to a rheumatologist, psychologist, pulmonologist (sleep doctor?), infectious disease doctor, hematologist, gastroenterologist, and have seen 3 natural health practitioners.

I'm currently on 50mg of Adderall in order to maintain a somewhat normal life. with my Adderall I am able to work my job (30-35 hrs per week) but that is the extent of what I can do. I go to sleep after work every day, only waking up around 9 or 10pm to take a shower and do my laundry for the next day for work. I have absolutely no social life whatsoever. I spend all weekends and days off sleeping or lying in bed.

To attempt to make this short enough to be readable I'm going to try and make the rest of the posts into lists. If you need further details, please ask.


*the strange things- these are the issues that seem particularly puzzling.


- Pulmonary Embolism, 07/2012. all clotting studies came back normal. 6 months on Warfarin. cause unknown

-Mastoiditis (I know, WTF?) with NO ear infection, 03/2013. treated and cleared with IV Antibiotics . cause unknown

-Highly Elevated IGE Levels 12/2012, but I don't have any allergies. cause unknown

-Elevated ANA 12/2012, 03/2013, 06/2013, 08/2013. cause unknown

-Positive HIV test 12/2012. referred to infectious disease doctor. all confirmatory tests were NEGATIVE. cause determined to be elevated ANA

-Decreased appetite. I frequently go for 2 or 3 days without eating. This began before I started Adderall.

-Unintentional, unnecessary weight loss of 40 lbs in 3 months. I am 5'5, 140lbs to 100lbs, 07/2012 - 10/2012. I am now about 120-125. probably due to no appetite (duh)

-Car Accident in January 2013. after 6 years of driving with no accidents or tickets, I rear-ended a stopped vehicle at full speed. my phone was in the back seat, and I wasn't touching the radio or anything. I was looking straight ahead. it's like it just didn't register that I needed to stop. pulmonologist thinks this could be related to possible narcolepsy


*Illnesses / problems / symptoms I have had which may or may not be relevant. I also know some symptoms can be linked to one or more illnesses (eg. hair loss - anemia) but I think it is important to be thorough.

-Anemia

-EXTREME debilitating constant fatigue & sleepiness

-hair loss (3 'episodes' lasting several weeks each with excessive hair loss, thinning my formerly very thick hair to very thin)

-migraine (3-4 times a week, Excedrin usually helps)

-nausea (3+ times a week, reqires Phenergen, with and without migraine)

-dizziness (2+ times a week, with and without nausea)

-diarrhea (not related to meals)

-vomiting (not related to meals)

-brain fog

-no short term memory

-difficulty concentrating

-tremor (I think it's from Adderall)

-severe stomach cramps (5 or 6 separate 'episodes' not related to meals, feels as if I have taken a stimulant laxative)

-I am always very cold (even with normal hemoglobin)

-I feel better and more energized when I don't eat, but I know this is common among people who fast.


*Tests I have had.

-ANA- positive 10/2012 to present

-HIV- positive initial test, negative confirmatory test, caused by elevated ANA

-All allergy tests- all negative except elevated IGE levels

-Autoimmune panel= thyroid, sjogren's, celiac, etc- all negative (except HIV)

-Hepatitis, all types, all negative

-STD's, I believe syphilis and gonorrhea- both negative

-Adrenal function- normal

-EBV- negative

Chrohn's, ulcerative cholitis (sp?)- negative

Lupus- being considered my rheumatologist. she is waiting to rule out all other possibilities.


-Psychological tests- I had Depression and panic attacks from 02/2012 until about 09/2012. they were situation related and went away once I removed myself from the situation. All antidepressants and antianxiety meds were stopped 11/2012. I have had no further related issues. All further 'tests' were normal. I discontinued weekly visits with a psychiatrist and psychologist 12/2012 with their blessing. Unfortunately, when I mention this it seems that many doctors assume this is still the issue, but is absolutely is not.

-the natural health practitioners have suggested more diseases and cures than I can count, none of which helped one bit (after my parents spent thousands upon thousands of dollars out of their pocket).


this is my current plan-

this Friday, at request of gastroenterologist, (10/18/13) I am having a colonoscopy and an endoscopy, with biopsy for celiac's testing. blood tests for celiac's were negative.

on 11/06/13 I am having a sleep study to rule out sleep apnea, and the "nap test" the following day to test for narcolepsy. the sleep doctor is thinking I may have narcolepsy or "idiopathic hyper-somnolence" which I do not believe I have. at least I certainly hope not!

if these are not helpful, my GP wants a stool test for parasites, and I am going to request a test for lyme disease.

if all above are negative, I am thinking I may call the infectious disease doctor and just ask him to do any blood lab he can think of.

I am not a hypochondriac. please don't think I am. I feel like I sound that way sometimes. I just desperately want a normal life. I didn't realize how strange mine was until college, when all my hallmates were involved in activities and hung out with each other, and went to parties, while I slept. I just want to be able to go to work and come home and clean, do laundry, go grocery shopping... I want to have a social life. I want to go to church on Sunday. I want to get married and be a good mother who doesn't sleep all the time.

I know this is a lot. any input helps. please make any suggestions. if you need further details please ask. thank you so much.
Tweet