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jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012

I just need some answers!!! Please help me!!!

Posted by @jocienance, May 28, 2012

I posted this discussion several days ago and got no reply so I decided to try again to see if maybe this time someone will see it. I’m honestly desperate right now. 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!

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piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, May 28, 2012

Hi joice. Welcome, I am so sorry that you are dealing with so many health issues at such a young age, Sweetie I feel that you will have to wait until you see the specialist early June and see if they can give you the answers that you need. We have a good support network and I am here anytime that you need to talk and there are others members also that are more than willing to be there for you. I hope my dear that you do get some answers soon. Do you have a good family support behind you? I hope you do sweetie rely on them to give you the strength that you need at the present time. Your in my thoughts Take care Piglit

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jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012
Posted by @jocienance, May 28, 2012

Thanks Piglet! And I have a great family…they have been here for me through all of it!!

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joanneo
@joanneo

Posts: 74
Joined: May 02, 2012
Posted by @joanneo, May 28, 2012

Hi jocie I am sorry to hear of your health issues there is no greater fear than that of the unknown. June will be here before you know it. Please keep in touch and remember that we are all here for you. God bless u. My prayers will be with u. Jodi


jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012
Posted by @jocienance, May 28, 2012

I will keep in touch thank you Jodi!!

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piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, May 28, 2012

Please do let usknow how things are going for you , wer’e here for you if you need us Take care sweetie Piglit

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jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012
Posted by @jocienance, May 29, 2012

Thank you Piglet and I will the doctors are thinking about taking out my gallbladder cause I have been throwing up pretty much anything I eat and I’ve had pain in my right side but at this point I feel like they are pulling trial and error and I’m the lab rat cause my CT scan of my gallbladder came back normal but at least they aren’t just letting things go on without doing anything


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, May 29, 2012

were always here for you my dear Take care piglit

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piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, May 29, 2012

i.m so glad family support makes all the difference

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bevyjean
@bevyjean

Posts: 5
Joined: Jul 25, 2012
Posted by @bevyjean, Jul 26, 2012

When they decided to take mine out ,they went in with a tiny needle and got a sample of inside. If they can’t pull out the tinyest bit of liqued, they’ll take it out.


TammyB
@tammyb

Posts: 10
Joined: May 27, 2012
Posted by @tammyb, May 28, 2012

Hi from TammyB. I do understand what it is like to have scary symptoms and not know what is going on with your body. The only advise I have is that there is a great physician and his name is GOD. So often we forget to go to Him and ask him to guide the doctors to help us find out what is wrong. He has that ability you know. My prayers are with you. Hang in there. Looking forward to see what they say in June. This date is not too far away. It will be her before you know it. Bless you.

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jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012
Posted by @jocienance, May 28, 2012

Thanks TammyB I can always use the encouragement that God is here!!


sasseelady
@sasseelady

Posts: 4
Joined: May 28, 2012
Posted by @sasseelady, May 28, 2012

Sorry you have been on this horrible journey, I’ve been there & know exactly how you feel. Have you been seen by an Endicrinologist? That’s where I finally got my annswers.I was diagnosed with Adrenal Insufficiency, started on oral steroids & 6weeks later I feel about 35‰ better. Good luck in your search for answers.

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jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012
Posted by @jocienance, May 28, 2012

They have tested me for everything and the only thing that seems to come up is something autoimmune and they dont know what so I am seeing a Rheumatologist at Riley thanks!


sasseelady
@sasseelady

Posts: 4
Joined: May 28, 2012
Posted by @sasseelady, Jun 9, 2012

I went through Rhuemotology about 15 year ago & was diagnosed with Fibromyalgia. As most of us know this diagnosis doesn’t help a lot since there’s no cure or treatment for it! It is however hereditary which is why I was tested after my mother was diagnosed. Good Luck!


jocie_nance
@jocienance

Posts: 31
Joined: May 23, 2012
Posted by @jocienance, Jun 11, 2012

Thank you!

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