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

Posted by jocie_nance @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!

Liked by China

@firemonarch

hello 🙂 i am just new to this site. i am 9 years older than you but i have been dealing with crazy symptoms and no answers too. it started with headaches, fatigue, low fevers, dizziness, pain, collapses, abnormal involuntary muscle movements, atypical seizures, cognitive fog, positive ANA but no known diagnosis or reason, antibodies in my thyroid but nothing diagnosed, a Chiari Malformation type 1 but very mild, sleeping problems, ETC………..i do NOTHING now and i used to be a full time Pilates student and teacher and professional dancer and fire spinner. These doctors are just so confused and i am starting to lose my mind. My insurance is HMO so it is very hard to get the doctors i need. But i feel you because we seem to be crazy cases. the doctors seem to only practice what they learned in school and have very closed minds to everything outside that. Have you gone to an integrative specialist? I am going on june 4th. they are supposed to dive down way deep…deeper than the medical doctors. like maybe toxins you may have been exposed to or other random things. If you haven’t tried that, maybe try seeing one. Also acupuncture and massage for some relief. Also my seizures are atypical but i am ALWAYS conscious. i have issues talking after or before, like the “auras” and they are always very different and can go on for up to an hour or so–on and off. but this is a new symptom for me…since february. The best thing to do is try to keep your psychological health good as best you can. I have bipolar type II so i have had a really hard time. but Buddhism–meditation is a good thing. but at this point i’m about to kill these doctors. Sometimes having a positive ANA doesn’t mean anything at all. Is yours high? mine is 1:640 which is pretty high. idk….you are not alone. <3

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I haven’t seen an integrative specialist but I am seeing a specialist at Riley in a week and they will probably send me to many different specialists I absolutely understand what u r going through my seizures are the same way and I can’t really do anything anymore but I have been doing some more research and POTS is something that I’m going to look into I have almost every symptom so it would make sense but it’s just a waiting game right now and I honestly don’t remember what my ANA was thanks!

Liked by Patty Jean

REPLY

Hi, it sounds like you are on the right path by having an appointment where you will hopefully have a comprehensive work up. Have you gone through the Mayo Clinic for that? I went to them for similar symptoms and feel much better. Your symptoms are more complicated. You need various specialists working together to get resolve. My situation was aggravated by the fact that I also had Epstein Barr (which most of us have or get) on top of all the auto immune issues. The first thing I had to do was accept that I needed to make a lifestyle change (in your case perhaps lots if rest, being good to yourself, home schooling etc.). As you become educated on treatments you may find yourself returning to a normal lifestyle with the knowledge of when you need to pull back. I now know many of the triggers for my auto immune disorders and I now avoid them. I can’t say enough about how great the Mayo has been for me. Best of luck to you. Virginia

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@anon35852298

Hi, it sounds like you are on the right path by having an appointment where you will hopefully have a comprehensive work up. Have you gone through the Mayo Clinic for that? I went to them for similar symptoms and feel much better. Your symptoms are more complicated. You need various specialists working together to get resolve. My situation was aggravated by the fact that I also had Epstein Barr (which most of us have or get) on top of all the auto immune issues. The first thing I had to do was accept that I needed to make a lifestyle change (in your case perhaps lots if rest, being good to yourself, home schooling etc.). As you become educated on treatments you may find yourself returning to a normal lifestyle with the knowledge of when you need to pull back. I now know many of the triggers for my auto immune disorders and I now avoid them. I can’t say enough about how great the Mayo has been for me. Best of luck to you. Virginia

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Thank you Virginia! It has been tough but I did make the decision to drop out of the last 8 weeks of my freshman year and work from home. Not being able to see my friends has been the big killer, but right now I just need to focus on getting better then I will go back to spending time with my friends. I am not going through Mayo Clinic for the appointment at Riley, but of we don’t get answers there, we will head to Minnesota. Thanks again!

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Hi Jocie, Sorry to hear about all your health problems. Have any of your doctors or hospitals explored the possibility that you might have Guillain-Barre syndrome or Lupus? Read about these on the Mayo Clinic website. Hope you find answers and a cure….. Zumac

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@zumac

Hi Jocie, Sorry to hear about all your health problems. Have any of your doctors or hospitals explored the possibility that you might have Guillain-Barre syndrome or Lupus? Read about these on the Mayo Clinic website. Hope you find answers and a cure….. Zumac

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Initially they did look at Guillain-Barre Syndrome but it has been too long that this has been going on for it to be that. They have also run all the tests for Lupus and nothing has come back positive on that besides the ANA but that could be due to a lot of things. Thank you very much for replying!

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Yesterday I went to Riley and after much discussion with the doctor she said that she may not be able to pin point a diagnosis, but if we do healthy things that could help relieve symptoms then that should help. I have to be on a structured sleeping pattern and schedule very similar to a toddler. I can’t take naps to help regulate my brain function, I have to be on a rice and black beans diet only, and I have to go on 3-5 minute walks and do some stretching. We went to the hospital and got a copy of my CT scan that they did when I was there and she is going to look at my gallbladder and potentially removing that. So far no more answers, but she said that she would do a table tip test but that she is almost positive that it would be abnormal and I would be diagnosed with POTS, but she said the treatment is the same and that I need to add lots of salt to my diet because I drink too much water. I have an appointment with my neurologist today and another appointment with her in July, but she is going to work with my family practitioner on the gallbladder issue.

Liked by Patty Jean

REPLY

Ask them to check your MRI for a Chiari One Malformation. Many of the symptoms you describe I have/had. A Chiari Malformation is a malformation in which the cerebellum hangs down into the foramen magnum (opening into the spinal canal) and it causes a host of problems. I had horrific headaches prior to my surgery. They tend to be at the back of the head where it starts to curve into the neck (sub-occipital region). I had many migraines prior to my surgery, too. I have heard of people with Chiari having seizure problems. It is worth a shot to have a neurosurgeon take a look at your MRIs. Just a suggestion. I am so sorry you have so many health problems at such a young age. My son is 24 and has been suffering from ulcerative colitis the past 15 months. It has been hell for him. He is doing better now. I hope you can find some relief. Please go around and find a doctor who can help you. Do not take no for an answer, and do not settle for an undefined illness and therapy. 🙂

REPLY
@firemonarch

hello 🙂 i am just new to this site. i am 9 years older than you but i have been dealing with crazy symptoms and no answers too. it started with headaches, fatigue, low fevers, dizziness, pain, collapses, abnormal involuntary muscle movements, atypical seizures, cognitive fog, positive ANA but no known diagnosis or reason, antibodies in my thyroid but nothing diagnosed, a Chiari Malformation type 1 but very mild, sleeping problems, ETC………..i do NOTHING now and i used to be a full time Pilates student and teacher and professional dancer and fire spinner. These doctors are just so confused and i am starting to lose my mind. My insurance is HMO so it is very hard to get the doctors i need. But i feel you because we seem to be crazy cases. the doctors seem to only practice what they learned in school and have very closed minds to everything outside that. Have you gone to an integrative specialist? I am going on june 4th. they are supposed to dive down way deep…deeper than the medical doctors. like maybe toxins you may have been exposed to or other random things. If you haven’t tried that, maybe try seeing one. Also acupuncture and massage for some relief. Also my seizures are atypical but i am ALWAYS conscious. i have issues talking after or before, like the “auras” and they are always very different and can go on for up to an hour or so–on and off. but this is a new symptom for me…since february. The best thing to do is try to keep your psychological health good as best you can. I have bipolar type II so i have had a really hard time. but Buddhism–meditation is a good thing. but at this point i’m about to kill these doctors. Sometimes having a positive ANA doesn’t mean anything at all. Is yours high? mine is 1:640 which is pretty high. idk….you are not alone. <3

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I don’t like to hear the word “mild” when describing a Chiari One Malformation. I advise you to see a neurosurgeon with expertise in Chiari. Unfortunately Mayo is not known for being a good place to go for Chiari. There is no such thing as a mild Chiari – I would bet the doc who told you that does not know anything about Chiari except what the definition is. I did my research and had my Chiari decompression surgery done at UCLA and I live in Michigan. Please see a neurosurgeon with expertise in Chiari. I am worried about you. KC

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@sasseelady

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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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!

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@karma

Ask them to check your MRI for a Chiari One Malformation. Many of the symptoms you describe I have/had. A Chiari Malformation is a malformation in which the cerebellum hangs down into the foramen magnum (opening into the spinal canal) and it causes a host of problems. I had horrific headaches prior to my surgery. They tend to be at the back of the head where it starts to curve into the neck (sub-occipital region). I had many migraines prior to my surgery, too. I have heard of people with Chiari having seizure problems. It is worth a shot to have a neurosurgeon take a look at your MRIs. Just a suggestion. I am so sorry you have so many health problems at such a young age. My son is 24 and has been suffering from ulcerative colitis the past 15 months. It has been hell for him. He is doing better now. I hope you can find some relief. Please go around and find a doctor who can help you. Do not take no for an answer, and do not settle for an undefined illness and therapy. 🙂

Jump to this post

Thank you and I will look into it 🙂

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@sasseelady

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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Thank you!

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@sasseelady

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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Autoimmune illnesses are so difficult to diagnose because of so many symptoms and possiblities. I, too, have seen the rheumatologist, had TWENTY vials of blood drawn and no “for sure” diagnosis! They lean towards Polymyalgia Rheumatica because my Dad has it, and they have prescribed steroids and a pain killer which help, but by no means alleviate the problem! (s) It is a long, tiring process and we just have to be patient with the docs as they try to figure us out! For years I would have some sort of ailment pop up and about the time I was ready to cave in and see a doctor it would disappear. . .. and then another ailment would crop up. .. same story over and over. I thought I was waking up with the flu VERY often, would force myself out of bed and in to work and would feel better midmorning. NOT pregnant, just achy and sooo tired. After work I would sometimes just go home and crawl into bed. I try to ignore being sick and it just doesn’t work. I have good days and bad, when I get tired I try to sleep, but don’t want to waste my life by sleeping it away. . . . but don’t want to be so miserable I can’t do anything either. It’s a BIG juggling act and sometimes I think the balls are turning into chainsaws and multiplying midair! A good anti depressant helps too, without making me “too” happy. Good luck with everything, I pray daily for everyone with pain and “symptoms” and find that talking with God DOES help! Keeping you all in my thoughts and prayers. Janine

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@sasseelady

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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Thank you for the prayers!

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I recently became very sick. no seisures but vomiting ,lowgrade fever,extreme fatigue, rash in my scalp, itching palms and bottom of feet and alot of the same symptoms u have. Have ur drs checked for Celiacs Disease? I was so sick I thought this was it and when they told me the biopsy they did was for Baretts Esophagus which is a fast moving incurable cancer(it was supposed to be for Celiacs) I was very scared. Even though I am 57 and have been eating the same all these yrs, my body could no longer handle the gluten and I am not ready to go yet. Everything came back negative BUT I started felling better and some of the symptoms started disappearing when I started eating gluten free. I have a sensitivity to gluten because the healthier I tried to become the sicker I was getting. I couldn’t hold food down or in. Lost 25 lbs and couldn’t leave my home for more than 20 min at a time. I will say a prayer for u and hope that things will change for ur health but get on the net and do some of ur own research. check out alkalizing ur body, change ur diet cause the gmos and the things they’re putting in processed food are starting to make alot of people sick. It could be ur diet. I am not putting down any drs cause they are all very good but its called medical PRACTICE for a reason.Be ur own detective and unfortunatly we have to police our own health now. Good luck

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@hevnsntmihere

I recently became very sick. no seisures but vomiting ,lowgrade fever,extreme fatigue, rash in my scalp, itching palms and bottom of feet and alot of the same symptoms u have. Have ur drs checked for Celiacs Disease? I was so sick I thought this was it and when they told me the biopsy they did was for Baretts Esophagus which is a fast moving incurable cancer(it was supposed to be for Celiacs) I was very scared. Even though I am 57 and have been eating the same all these yrs, my body could no longer handle the gluten and I am not ready to go yet. Everything came back negative BUT I started felling better and some of the symptoms started disappearing when I started eating gluten free. I have a sensitivity to gluten because the healthier I tried to become the sicker I was getting. I couldn’t hold food down or in. Lost 25 lbs and couldn’t leave my home for more than 20 min at a time. I will say a prayer for u and hope that things will change for ur health but get on the net and do some of ur own research. check out alkalizing ur body, change ur diet cause the gmos and the things they’re putting in processed food are starting to make alot of people sick. It could be ur diet. I am not putting down any drs cause they are all very good but its called medical PRACTICE for a reason.Be ur own detective and unfortunatly we have to police our own health now. Good luck

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I have been gluten free now for six months but my stomach has actually gotten worse since I changed my diet so now I can only have rice and beans because nutritionally the doctor says you get all the nutrients you need in those two foods and so far I haven’t thrown up since I started that and she thinks that there may be a problem with my gallbladder so we are looking into that and I do so much research but haven’t been able to figure things out thank you for the advice and prayers!! 🙂

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