4 yearss and no answers

Question

I figured I would give this a shot.. I'm 25 years old now, my symptoms started shortly after I turned 21. It started with back pain, then led to stomach and pelvic pain. So bad I was in the doctors a few times a week and in the ER. I was passing out, sweating, shaking, vomiting, crying, because of the pain. I was put on cymbalta, valium, Norco, and a million other drugs. No one would do anything for me because they couldn't find anything wrong me. Then Shortly after I had to cysts pop up on right ovary and a few on my kidneys. Then a month later kidney stones. I seen specialist after specialist. Finally a OBGN decided to operate, she found massive amounts of scar tissue from my appendix erupting when I was two. During the surgery my bowel was cut and I was hospiliazed for a week. Four days out of surgery my stomach opened up and I had to have a nurse come into my home daily to check my vitals and pack it. My massage therapist then noticed a lump on my rip cage and thought it was osteosarcoma. Doc scheduled to see surgeon. Surgeon removed lump in which she said it was  a lypoma and it was flat and removed scar tissue again.. because of my smptoms got worse.my story goes on and on. I switched doctors recently because my old doctor wasn’t helping me and acting like I was a drug seeker,.. (even wanted me to go to a drug rehabilitation center and refused to give me meds) I have been doing a lot of research and I think it's something to do with my thyroid) my new  doctor said it could be a 1,000 different things. My alkaline runs anywhere from 33 -43...AST (SGOT) usually runs around 9 or 10.. amorphous crystals in urine always 3 or more, always blood in urine usually large sometimes small, and cloudy. My anion gap runs high usually and sodium and potassium in the urine as well. All symptoms I have or had in the last few years...Dizzy, flank pain, pelvic pain, rib pain,lypoma, abnormal vision changes in both eyes, kidney stones, dark circles under eyes, red dots popping up every where, consipation, diarrea, always tired, sick to stomach, vomiting, high blood pressure.axiety,chest pain, head aches, gum disease, hands cramp up, scoliosis, ulcer in stomach, ADD, hard to breathe, skin changes eczema, lumps.. had to have two removed by groin.. dermatologist said usually kids only get them, now Im  getting painful lumps behind ears and armpit. Muscle pain, blood in urine. Vitamin D is low at 30. Did the basil temp test my temp is usually around 97.0- 97.2 everyday upon wakening, always coldfeet and hands, deep lines in finger nails, my moons are all mostly gone at 25, high blood pressure, numerous sinus infections, always clearing my throat. b12 and folic acid drops make me feel better.Eye twitches spasms in back of head, List still continues.. My grandmother was a diabetic and had a hypothyroid. My dad had polio, rheumatic fever,  stroke, heartache,  and colon cancer. My mom is diabetic. If anyone has delt with this please let me know, I'm starting to think my new doctor thinks i'm crazy too.. I could probably write a book.

Sunshine49548 · Answer

Haven't been on here for a while.. Since I have been on here.. I have done my own research and found out that staying away from milk and  glucose.. takes all my rib cage pain away and I feel like I have more energy. I notified my new GI doctor and he has scheuled a lactose test at the end of the month, but no test for celiac yet. My new  primary doctor has made me go to a rehabiltion hospital. I was evalated by a MD, a   psychiatrist and a PT.. They said they all meet up at the end of the day and will discuss my treatment plan... and I will receive a dignosis in the mail and treatment plan.. Well good news is i'm not crazy and they believe it might be celaic as well.

HessyKat · Answer

My blood tests came back fine in the beginning when I was younger before 21yrs old but when i had my son my thyroid went into a thyroid storm. I was reading over your symptoms and you have so many that lead me to believe you seem to have a thyroid disorder possibly Hashimotos. I had an Endo a long time ago that was great and I lost touch with him when he moved but he told me that those red dots that pop up on the body is definitely from the thyroid. I have them and when my levels arent right i notice that i get more of them. Anyway, sorry you are having such a hard time. I also have alot of the problems with female issues and had to have gallbladder surgery and back surgery . I have also had my family at times just think alot of things i would complain with was in my head. I understand how frustrating it can be trying to get doctors to listen to you. Best of luck to you and I sure hope you get some answers and help with your issues.

Caryopteris · Answer

I'm pretty sure it's Celiac disease.  Family history of colon cancer adds weight to all the symptoms you have.  The tests are not always accurate for Celiac disease, so make sure they do all the latest blood tests and upper endoscopy with biopsy if necessary.  But you need to find out so you can get off gluten and not cause yourself more autoimmune diseases.

Sunshine49548 · Answer

Thanks, I will defintatly persue that. I went into the ER tonight because I had a lot of back pain and brown vaginal discharge. The doctor did a ultrasound and found something actually really wrong. I have polycystic ovarian syndrome. My ovaries were very inflmaed and there were numerous cysts on each one. She said i'm going to have to see a hormonal doctor and she also thinks there is more thing wrong with me this is just partially. She said bascially my bod is making to much male hormones. She was also worried about the blood to..she said its leaking from some where but she doesnt want to keep giving me radiation because of cancer from radiation. She also said my new doc is going to have her hands full but they actually went to school together and she is a very good doctor and this info is defiantly going to help her figure whats causing all of these problems.

isis006 · Answer

a lot of the time, drs may think were crazy, but they shouldnt because they dont think to check every single little thing. your dr has no right to think youre crazy without checking for the thousands of problems your new dr mentioned it could be. your dr may not want to check every little thing because it takes so much of his time, but your concern in your health, so make him check. go at least once a week so he knows youre not going away until he finds out whats wrong with you, and if he refuses to do so, find someone that will. if youre having blood in the urine, thats usually a problem with your kidneys which could be or lead to renal failure, so its important to get every single test they could think of. also, if youre having so many growths/ cysts, you want to get some out of the ordinary testing, antibody/antigen tests, tests looking for dna abnormalities and mutations.. things like that because it sounds like it could be some kind of autoimmune disease, etc. but definitely get thorough kidney testing and go from there, because blood in the urine is something to worry about.

Sunshine49548 · Answer

Yes pretty much everything..  I just had ny thyroid checked and got the results today, it's not abnormal. Someone at my job today said maybe its celiac disease..well I do have alot of sypmtoms and celiac can causeother deficences so on my next visit to the doctor i'm going to ask her about it.

rumpled · Answer

This ended up in the adrenal insufficiency area - the vomiting, low BP, low D, low immune system and stuff fits that - has anyone ever tested your cortisol or ACTH, renin, aldosterone, DHEAS and/or looked at the pituitary as you could be hypo or panhypopituitary?