tpapik Posted April 10, 2013 Report Share Posted April 10, 2013 i know many of you have gone longer than I have. with POTS. I was diagnosed in November im 26. Last May I found out I was pregnant- June i started bleeding - it didn't stop- admitted to hospital after water broke docs freaked out gave me Vancomycin, Zosyn, and Zyvox bc they thought i had an infection I did NOT! (i swear this is where the belly problems started) October Nora was born- End of October Nora died- 2nd week of November POTS diagnosis- Seen Dr. Jaeger - negative skin biopsy negative TST negative vasvular test. Negetive Neuro exam. Negetive MRI. Negetive CT angiogram. Negetive Pancreatitis Negetive colonoscopy - Gastritis in stomach - confirmed with EGD. Negetive paraneoplastic autoantibodies. IGG a little High, Tryptase- normal..Now. I eat- im hungry - i eat im hungry lost 19 lbs since NovemberStrep throat- had antibiotic- still sore- now cold sore- swollem lymphnodes in neck, doc says im OK. put me on steroid for a few days suppose to start todayJust found out my work wont allow me intermittent FMLA- its a long story- but im 2 days of calling off away from being fired as a RN.- found that out todayMore testing- sugar normal thru hemoglobin A1C panelThyroid- had nodule - biopsy normal- retest ultrasound and thyroid levels in Mayantithyroid antibodies - NegetiveANA 1:80 speckeled rheumo doc apt finally on Friday- im freaken out.Found out I had milk Allergy- Okay?! thanks?Now on Wellbutrin, NadololIntragrative Doc puts me on a very high dose of probitoics and enzymesGI doc has no idea whats wrong with me wont order hydrogen breath test.- wants to do a test he hasn't don't in "15 years" but cant find a lab that will do it.Sick of the throat problemSick of always feeling hungryI don't want to keep losing weightI want answersI am not nauseated I don't feel FULL - im just the opposite of gastoparesisI hate my life officially :-( I want to give up.- I want my baby back..........and I want my baby back.just venting Quote Link to comment Share on other sites More sharing options...
Joann Posted April 10, 2013 Report Share Posted April 10, 2013 I am so sorry. Hang in there don't give up. This is a good place to vent and there are many here that can identify and offer you some advice. I had two miscarriages before getting sick and they were devastating, I can't imagine your pain losing your baby. Have you thought about talking to a counselor, or a religious pastor/minister/, or maybe even a close female friend or relative?I am sending you positive thoughts Quote Link to comment Share on other sites More sharing options...
ShakeyTheOwl Posted April 10, 2013 Report Share Posted April 10, 2013 This may sound off,, but would rather hear venting, then a person keeping this to self. I hope you have place and people to release all the frustration and love /healing for loss. Also, all the negative tests, been there done that, and believe there are others like us. 2.5 years for me to get dx, with cancer as the first ruling out. At some point, was so sick, I kind of gave up in the game it felt of being tossed from one specialist to tests, to appointments, etc. I too are like crazy, couldn't keep any weight on, 27lbs in three months and drenching sweats . No explaination was given as to why. I've noted a few others with dys that this has happened too. I do Hope they find answers quickly for you and sending you strength and Hope and healing Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted April 10, 2013 Report Share Posted April 10, 2013 I'm sorry you're going through so much. Hang in there and don't feel bad venting. That's a great use for this forum. Good luck and sending positive thoughts your way. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted April 10, 2013 Report Share Posted April 10, 2013 So sorry for your loss and your sickness. The forum helps in many ways. There are people who can identify with portions of your story. Sometimes that's how the healing begins Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 10, 2013 Report Share Posted April 10, 2013 Giant (((hug))) to you. I'm so sorry for all you've been through. Please don't give up! and I hope you find answers soon. Quote Link to comment Share on other sites More sharing options...
angelloz Posted April 11, 2013 Report Share Posted April 11, 2013 Hugs to you sweetie, you have been through so much but I can tell you are a strong person. Keep venting to us! We all need to be able to do that. I am in year 4 since my diagnosis. I lost a lot of weight at first..then stabilized, now losing again. It is scary, like you, I eat plenty. I am seeing another gastro doctor in July. Just know there are others with the weight issue. Treat yourself kindly, talk when you need to, watch something funny and know that we are rooting for you! Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted April 11, 2013 Report Share Posted April 11, 2013 So many things in this life are just so unfair, and no words can express the deep sorrow you are feeling. I can say I understand, but know one really understands but you. Dealing with grief is such a personal issue. But I hope you know that you are not alone. I hope and pray that you get some relief soon. Don't lose your faith. Hang on to the memories that you have, and try to find comfort in them. Remember we are always here for you. This is a safe place to vent. God Bless Quote Link to comment Share on other sites More sharing options...
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