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Posts: 31
Joined: May 23, 2012

Unknown Health Issues

Posted by @jocienance, May 23, 2012

I am a fifteen year old girl and I have been struggling with numerous chronic health issues for about 4 years now but everything has gotten even more severe in the past year. I have struggled with migraines, widespread chronic pain, chronic fatigue, over active bladder, suspected fibromyalgia, swollen lymph nodes, continuous throwing up, hair loss, Gilbert’s syndrome, elevated bilirubin causing jaundice, atypical seizures, stroke-like symptoms twice without the prescience of a known blood clot, easily bruising, vitamin D deficiency, depression, low focus levels, trouble swallowing, weak immune system, swelling, sun sensitivity, low blood pressure, high pulse, memory problems, and so much more. I have been in and out of the hospital and it has been difficult on me. Two particular cases hospitalized me for a long period of time. I began to seize, but I was conscious and it lasted for 45 minutes the first time before they injected muscle relaxers that stopped the seizure. After this happened I couldn’t talk or understand who people were or what was going on. I was really scared and I couldn’t walk. The pain was absolutely unbearable. I was on vacation when this happened the first time, but it happened a second time when I got home about a week later. No one could explain this, but they finally came up with an atypical migraine diagnosis due to my past with migraines. The doctors are still unsure of a diagnosis of that situation. I also had two occurrences when my under arms turned dark blue and it felt like a bruise. My rheumatologist, general practitioner, and neuroapthamalogist could not explain this either. We have done many different blood tests, MRIs, CT Scan, EKGs, EEGs, and so much more. I have had chest pains, acid reflux, and left side pain. None of which can be explained. I have been out of school for 8 weeks due to my health issues and can barely do anything without feeling very ill. If I’m around anyone who is sick I become sick. It is horrible and we have an appointment at Riley Children’s Hospital in Indianapolis for June 7 with a pediatric rheumatologist. I also have a positive ANA but no other signs of Lupus in my blood work. I have had troubles sleeeping and waking up multiple times in the middle of the night to use the restroom. I was just wondering if anybody has any insight as to what could be going on? Thank You!

Liked by FMSgirl



Posts: 1
Joined: Jun 13, 2012
Posted by @fmsgirl, Jun 13, 2012

I am a 14 year old girl, and I have Fibromyalgia. I went to the pediatric Rheumatologist at Riley and that’s when I found out… I haven’t had near as much trouble as you have, but I have been blacking out every time I stand up and my DO said it was from low blood pressure. I had two knee surgeries last fall and FMS has set me back really far with the progress I was making. The problem with Fibro is that nobody knows exactly what it is. I can’t physically do any of the sports that I was once a part of (swimming, marching band). I have a really hard time sleeping as well, I’m on Melatonin but I still wake up multiple times every night. I really hope everything works out for you! I hate it that young people have pain like this. Good luck, you’re not alone 🙂

Chad Slick

Posts: 1
Joined: Jun 13, 2012
Posted by @chadslick, Jun 14, 2012

Hi jocie_nance,

I’m no doctor but I have had my share of health problems which led me to educate myself somewhat and it seems that some of your symptoms could be explained by a condition known as a Type One Chiari Malformation. It’s a problem with the formation of the lower back part of the skull/upper neck area. It causes crowding of the lower rear part of the brain, which can lead to all kinds of weird symptoms.

I would also want you to have an echocardiogram performed if you were my child. It doesn’t hurt and can reveal problems with the heart that don’t show up on an EKG. You’re young, so this may have been overlooked, but some of your symptoms are suggestive of a possible heart problem.

Also, there are connective tissue diseases or disorders, such as Ehlers-Danlos syndrome or Marfan syndrome, and probably other conditions, that can predispose you to both Chiari and heart problems. These are usually variable in symptomology from person to person and are progressive, meaning that they may not fully express until well into adulthood.

I wish you the best and can only suggest that you educate yourself as much as you can, without becoming totally obsessed of course, because in the end nobody cares as much about you as you do, with the exception, hopefully, of your parent(s) or primary caregiver. But they likely don’t have the time that you do to pursue your answer.

The fact that you’ve posted on this forum tells me that you’ve already begun your quest and will likely find your answer. Always remember that there are people that you don’t even know, people who have been through similar life journeys, that do care about you and your pain.

And finally, if you can, find one primary advocate who cares and understands your issues, and who will take you to all of your health care appointments and monitor your hospitalizations. I know that this is easier said than done, but If you do, you will find it easier than going it alone.

I wish you all the best honey, as I’m sure that many others who’ve read your post do 😉 .

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