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Recently joined & looking for similar experiences & advice.

Jan 03, 2017 12:59 PM

I want to share my story in hopes that someone else might have advice or a similar experience.
So far in my 18 years of life I’ve been diagnosed with a scalp birthmark (birth), tethered spinal cord (birth), amblyopia (lazy eye) (birth), tongue tied (birth), lactose intolerance (birth), iron deficiency anemia (birth), a hippocampal brain tumour (age 10), asthma (age 13), migraines (age 12), allergies, accessory navicular bone (age 14), osteoarthritis (age 14), stroke-like symptoms (age 16) & a slipped T8 disc (age 17). Throughout my life I’ve been under constant medical supervision, have never been allowed to exercise & seem to get sick a lot.. When I was 10 my left calf started going numb at night time, I started having joint pain w/ swelling, I got tired easily & I began having severe menstrual cramping. In the past 6 years my asthma, migraines & joint pain have sent me to the ER over 200 times leading some doctors to label me as a drug seeker, anxious, hypochondriac or attention seeking. I’ve asked to be referred to a pain clinic since I was 14 which has been quickly met with “you’re a kid, you can’t have chronic pain.” I & my parents have been fighting for almost 6 years for any doctor to listen to my problems. My final straw came after I began having heart palpitations which my doctor chalked up to anxiety, but when blood work showed low ferritin I found that indeed low ferritin can cause heart palpitations. Every time I prove a doctor’s diagnosis to be wrong, it seems I only have to fight harder for other issues to be recognized. I’m at the point where I want to give up on ever finding answers, but what gives me hope is that my mother has fought a similar battle with doctors. I don’t know where else to turn but to this community. I’m looking for other people’s experience of fighting with the medical system, advice about what other testing I can ask a doctor for, as well as any idea of conditions that could be causing my symptoms.

Jan 03, 2017 1:19 PM

Oh my, you have been thro soo much in such a short time. I wish I had answers for you but I'm still fighting for my doctors to actually listen to me that not all my symptoms are PTSD, stress, anxiety and depression related.
The only thing I can say is to keep fighting for answers and one of the best ways to do this is to jurnal everything and keep researching and keep going back to your doctor or if you find another doctor who you think is more sympathetic and will actually listen, then go to them.
I really wish I had more advice for you 😢 everyone on here I've found to be super helpful, very supportive and hold a wealth of experience and advice but we all live across the world so sometimes people take time before they see your post and are able to reply depending on the time zone they live in.

I'm sending you positive vibes and warm healing hugs xx

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