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

Hello Jocie
Have you had any falls injuries prior to the onset of all these symptoms?It does look like an immune response but as a cranio sacral reflexologist I have seen people that had falls or concussions that resulted in all sorts of health problems.There is an occipital reading we do in the base of the skull that indicates if there is lymphatic or structural or cardiovascular or fluid or stress issues.
It appears to me several systems are affected and the body is overwhelmed with issues.The stress and not knowing what it is and also not getting any results or diagnosis can make symptoms worse.What was the first symptom you experienced 4 years ago and did you go anywhere on vacation prior? greetings birgit

Hi Jocie,
I have had a similar experience in my family. My sister had an undiagnosed severely low thyroid and was in the hospital having many tests. The symptoms were pointing toward Meningitis, but the doctors were 100% wrong! As it turned out, they finally, after 3 weeks of other tests, they finally checked her thyroid. By the time they finally figured it out she was almost in a coma. Please go to an internal medicine specialist to be evaluated. Don't fool around with the seriousness of your situation. If at all possible, please go to the Mayo Clinic. They have the best doctors and your chances are great to live more of a normal life when going there. The Mayo Clinic is a well oiled machine and will not keep you waiting. There are Mayo Clinics in Florida, Minnesota, and Arizona. I am so fortunate that I have one in my state of Arizona. I was just recently diagnosed with tonsil and lymph node cancer and have seen Dr. Michael Hinni. He will perform my surgery on October 31. They have the best research and latest procedures at the Mayo Clinic. If need be, I would have mortgaged my house to have treatment there. Good luck to you and please use vitamin and minerals to build up your immunity in the meantime. Patty Jean

I have had a few situations that the doctors didn't have the greatest answers for. Luckly, as I am a therapist myself, I knew where to go. For my autoimmune hyperthyroid and sudden onset dementia I went to one of my own, someone who does great Upledger's CranioSacral Therapy. When I neede to fix my asthma, I mixed that in with NAET allergy elimination technique as well as some non-force chiropractic for balancing (A.K.). I think the dementia was toxicity in my environment and/or neck issues from a car accident a year earlier. For the autoimmune, rather than have a thyroid surgeon cut out my throat (and the subsequent medical dependency that would create) I went to the Upledger institute for a two week intensive (cash, but still cheaper than surgery/medication) and was cured of that. There are a lot of people these days with strange symptoms that the doctors don't know what to do with. There's no telling what environmental toxins and stressors are assaulting us these days. Holistic techniques are nice to have in your back pocket just in case. So far, so good. my Physician Heal Thyself (holistically) treatment plan has kept me off medications and the operating table. And I can sleep at night wthout worrying, but that's another story…Hope this is helpful.

Ok while I did not have the seizures, I pretty much had everything else. I was diagnosed with secondary Addisons disease which affects every part of ur body literally, but my health continued to deteriorate until my sleep apnea was diagnosed 3 yrs later. I would have sworn I did not have it and my symptoms were from the secondary Addisons disease but the tests showed that I have the most severe form of both types of sleep apnea. This was found out after I went into full respiratory arrest at my moms house jan 2, 2010, and my then 14 yr old daughter found me blue gray and cold. Now I feel healthy but for some reason have lost nearly 100 lbs in the past 18 months without trying. Now I am being tested for Graves disease, Crohns disease, and Celiac disease. I figure it is Graves disease. Btw if you do have secondary Addisons disease, then you will also have to be treated for hypothyrodism and yes i do mean hypo not hyper thyroidism as well, but you will need to see an Endocrinologist to diagnose this. I have also had trouble with various heart arrythmias.

Go see a couple of different Opthamologists. Dont rely on the first opinion. This is not a regular eye doctor… But an eye pathologist. Look for one that has been around a while. Have them look at your optic nerve to see if you have papilodema. It could be that one of the medications youre taking is causing you to be unable to rid your body of CSF. Often called Idiopathic Intercranial Hypertension. The MRI's, CT scans and EEG's are usually normal as are most of the blood work. If this is the problem the treatments are usually successful. Good Luck. Its a rare disorder vut I went through ALL pf the problems you listed for 2 years before it was discovered.

Thank you I will look into it :)

My heart is heavy for you as I read your post. I don't know where to start, I feel I have so many things I want to share with you. To hear that you feel like a lab rat as they search for answers must be so frustrating! Doesn't it make you wonder that the answers don't lie with them…I would like to suggest you get your hands on some material by Caroline Leaf and see if you could find some anwers there. It's obvious the roads you have been down aren't working and seem to be compiling on top of each other, one symptom being treated, creating another symptom and so on. God bless you sweetheart! I pray you find answers soon!

Thank you and I will look into it :)

Hi sweetie How are you feeling. Here if you need me Take care Piglit

A little bit better since I'm not throwing up thanks

Hopefully you will soon have the answers that you need to make you feel alot better Take care sweetie Piglit

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

I will continue to pray, if u believe, u need to ask Mary to ask for u, she is mother to us all. I am not religeous freak, just someone who has literally seen the power of prayer as long as u believe. God bless u and have faith. Debi

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!! :)

Hi sweetie. Sorry that things still aren't working out for you. How did you go seeing the dr . Remember that were all her for you anytime Take care Piglit

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. :)

Thank you and I will look into it :)

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.

I have heard a doctor say he would never have his gall bladder removed, it's too important to our bodies and there are ways to help it release stones and to get it healthier without surgery!!! Obviously if it's too far gone and gangrenous there's no choice but to take it out just because…yikes!

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

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!

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

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!

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

I am going to reply to you too. Go see two or three different opthamologists. Eye pathologist. A lot can be solved by looking at the optic nerve. Good luck.

i am actually going to do that, i saw an opthamologist but she didn't see anything wrong. i had an MRI done and it showed very mild strabismus. my eyes are worse since last year by a lot. but i have been diagnosed with conversion disorder finally.

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

i actually did see one of the best ones around here. at U of C. i have no need for surgery. i actually have conversion disorder as the diagnosis finally. the only thing that my 3mm Chiari might be causing is headaches. i spent a good hour with the surgeon just to make sure though. he was very good.

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!

Sorry 4 ur health problem. 2 young 4 all this. Parents doing all possible so b patience n things will b sorted out. Make sure u pray cause god hears us. Good luk

Thanks China

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.

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!

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!

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

Thank you for the prayers!

Thank you!

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.

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

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

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

i.m so glad family support makes all the difference

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

I will keep in touch thank you Jodi!!

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

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

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.

were always here for you my dear Take care piglit