I seeking opinions for a somewhat complicated medical situation I've been facing for many years. I'm hoping someone reading this may have some knowledge or experience to share, as I'm trying to work with my doctor to reach a diagnosis.
I just turned 26 and since I was roughly 13 I've been plagued with various health issues. Since I was 13 I've often had routine blood work done (CBC) and I can almost always expect to hear my iron and/or B12 levels are critically low. For quite a while my diet was suspect, so changes were made, but they never helped. Once I was 16, my doctor started giving me regular iron and/or B12 injections which seemed to help with the general fatigue.
When I was 17, my doctor diagnosed suspected my mother had Lupus, but ultimately diagnosed her with Fibromyalgia. The same year, he daignosed me with Fibromyalgia. I've suffered unusual muscle pain and weakness for a couple of years at this point, which I call unusual due to being so young.
A couple of years ago, my doctor and I started exploring other avenues, as Multiple Sclerosis had become suspect. I went to see a Neurologist who said he couldn't confirm a diagnosis of MS as my MRI had no lesions present - but he also told me, that at my age, it's possible to have MS and still not have any lesions present yet. The Neurologist referred me to a Rheumatologist. The Rheumatologist suspected that, in addition to Fibromyalgia, I may have Rheumatoid Arthritis. After a couple of visits, he suspected RA was not my issue, but Fibromyalgia was definitely present.
About four months ago my routine CBC came back with lower than ever iron levels. My doctor showed me my results and the range on the paperwork was supposed to be between 40 and 120, but my iron level was at 7 - My doctor prescribed four more iron injections over a period of eight weeks.
On a side note, I've always had issues with my bowel and digestion. Frequent consitpation, and when not consitpated, bouts of diarrhea. I've had cold hands and feet ever since I can remember - noticeably blue/black fingers and toes. I've often been told I look flushed, due to redness over my cheeks and nose, but this isn't associated with physical activity. I'm also evry light and sun sensitive. If I spend more than 10 to 15 minutes in the sun, I itch terribly and have a rash-like sunburn.
What has prompted me to dig a little further is a new symptom - hair loss. If I gently grasp my hair (not running my fingers through it) I have a minium of six hairs in my hand by the time I reach the end of my hair. It doesn't matter how many times I do this, I'll always get hair in my hand, and it doesn't matter how gentle I am, it still happens.
Just as my doctor and I were discussing MS, we briefly touched on the topic of Lupus, but quickly dismissed it. Now I'm starting to wonder if maybe we should revisit Lupus as a suspect.
In the past year I've had several confirmed incidents of Idiopathic Lymphadenopathy. I honestly have no idea what all of this could add up to. I feel like we're working very hard to find a definitive diagnosis, but from what I understand, being the age I am, nothing is easy to diagnose. I can't help but feel discouraged with the lack of answers, and going for so many test which never yield results leaves a person feeling a little bit crazy.
Does anyone have any ideas?