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About tpapik

  • Birthday 05/08/1986

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    United States
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    POTS started after a premature birth of my blessed baby girl Nora Renee . she lived a week <3 , 2 weeks later I developed POTS...Also been diagnosed now with Lupus.

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  1. Okay anyone here have breathing issues that start and you cant seem to get enough air? lasts about 2 weeks then im ok again ( atleast the first time anyway) I am in the middle of breathing issues to the extreme right now. someitmes i just cant get enough air , other times tight chest. Anyway I believe it is the Nadolol I am on (nonselective betablocker) I did well the first 4 months but then in June hit with breathing issues. I had no idea why as I never EVER had breathing issues in the past . (well before POTS anyway) But I also have Lupus so breathing issues scare me and I had a chest xray, CT chest, and PFTS ( awaiting results of PFTS, but chest and CT good) Anyway I convinced my doctor to switch me from Nadolol (nonselective beta) to Atenolol. I want to know how everyone does on atenolol? anyone have breathing nissues on it? I dont even know if the Nadolol is the reaseon and yes I am aware that if you have breathing issues with betas you shouldnt be on them at all- but im willing to try the selective one that focus's more on Just the heart and doesnt hit the beta receptors of the bronch. Anyway what are all of your thoughts? and any advice or others with breathing issues I welcome too
  2. Hi. I am from Ohio Yes I have been to cleveland clinic and yes ive seen Jaeger, and shields , anyway a ihave doctors out of university and want to see a POTS speicalist that is out of University Hospitals. had anyone seen Dr. Koontz? do you like him? does he do EKG's and Orthostatics? For those that have a neurologist do they do ekgs and orthos? prescribe your meds? Also from NE ohio anyone know of any other good POTS doctors that are not out of C.C
  3. I had something called polycolonal gammapathy come back..... sign of lymphoma , and I have 2 swollen nodes...... oncologist apt Thursday at 3
  4. DR said I had polycolonial gammapathy, and now I have to go see an oncologist :'( . I guess it means I could have lymphoma or another type of cancer............can this be over?
  5. my brother in law whos now 19 was diagnosed with severe POTS at 17..... its not that un common as most may think
  6. new symptom I cant catch my breath! if I lay down I feel a little better- sitting gets worse- standing the worst! ive been to the ER twice in 2 days they look at me like im crazy because all tests came back clean!? ive been under LOTS of stress........ anbody have this or know how I can help myself with it
  7. After a month wait to a wonderful Rheumotology doctor out of University Hospitals. I had a bunch of blood draws on Friday. I just got a message from her; stating this "By the looks of our lab results- I am strongly suggesting you have lupus; and this may be the answer to all the problems you have been having over the last 6 months" here were my symptoms POTS (obviously) Back aches - and I do not mean Low back pain. but full out "my spine feels like its inflamed" pain - achiness in my dominant hand and wrist (tolerable) pain/achiness in my hips (tolerable) low grade fevers for unknown reasons . . flu-like symptoms swollen lymph nodes in my neck sore throats blotchy areas on my skin that didn't itch - they just ..... come and go. especially in heat. lots of weight loss- IBS symptoms. Fatigue I am awaiting a return call from her. As all I know is from my message she gave me, I want to know more obviously and she wants to start me on Plaquenil. Honestly I am not surprised by the diagnosis. Even though I do not have the typical Rash. Or massive joint pain from the beginning (though I notice more now) . This all started right after pregnancy- Hence the start of the flare where most autoimmune happens. I just want some input from other Lupus members. Did you have weight loss as your symptoms prior to your diagnosis no matter what you ate. did you have the typical "rash" - because I did not. Doctor wants my to be on Plaquenil - how long did it take to help subside symptoms when you started it (specifically I need my weight back) The office is closed now - that I got the message from - so im sitting here kind of clueless. Thanks Tiffany
  8. 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 November Strep 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 today Just 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 today More testing- sugar normal thru hemoglobin A1C panel Thyroid- had nodule - biopsy normal- retest ultrasound and thyroid levels in May antithyroid antibodies - Negetive ANA 1:80 speckeled rheumo doc apt finally on Friday- im freaken out. Found out I had milk Allergy- Okay?! thanks? Now on Wellbutrin, Nadolol Intragrative Doc puts me on a very high dose of probitoics and enzymes GI 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 problem Sick of always feeling hungry I don't want to keep losing weight I want answers I am not nauseated I don't feel FULL - im just the opposite of gastoparesis I hate my life officially :-( I want to give up. - I want my baby back........ ..and I want my baby back. just venting
  9. That's why I am in the Hospital- im a nurse so - I understand most of it. no I don't have pancreatitis no I don't have celiac disease they don't know what I have- as for the fever I had strep throat- its slowely going away. I have weight Loss BECAUSE of sterrahorea. that means my body isn't digesting fats- im going for a second colonoscopy today. I am being followed by what I believe is good doctors- ive lost a total 19 lbs in 4 months - some takes part in that was baby fat some is I was nausteaed when I was first diagnosed some was well my underlying unknown cause- I had an ANA 1:80 speckeled- I see rheumo soon- My Cardio things my dismobility in my bowels secondary to POTS causing malabsorption. Another thinks Small bowel overgroweth. we don't know. I was tested for all the IGG's so far and those are all normal, not IGE yet. I have had many a tests. RUQ ultrasound CT abdomen/pelvis, echo, EGD, colonoscopy, MRI brain, CT angiogram chest, many blood works, tryptsase, Xray of belly Xray of spine, thyroid biopsy, - been tested out of mastocytosis, thyroid cancer, adrenal tumors, there is no pancreatic masses; so no I don't know whats going on. I also had labs drawn for paraneoplastic auto antibodies, negative, I have had skin biopsys and thermoregulatory sweat test that was negative for any neuropathys. so this is where we stand- I am not ignoring my symptoms I promise if you have any other ideas it is appreciated im not scared
  10. shakingtheowl- I also had a placental abruption- I lost her at 6 months prego- she lived a week. but I bled my whole pregnancy- had a subchrionic hemmorage that turned into an abruption and emergency c-section
  11. I dont know how to do the polls really. I was jut trying, im stuck in the hospital right now so it will only let me do so much intereaction via dinet for some reason
  12. my pots started after birth- baby passed away 2 weeks later POTS for this girl. BUT I have other symptoms. low fever, anxiety, cant sleep , fatigue, weight loss, steratorrhea, TSH T7 T3 T4 levels all checked right after pregnancy and were normal. Had a benign nodule. Can I still have hyperthyroidism?? can levels change post pregnancy?
  13. Sooooooooo I had an abnormal Qsart (which btw my docs tell me is not very good (docs at cleveland clinic- but wont say who) . Then I did a skin biopsy -NEGETIVE I was very excited about that - but still waiating for the thermo sweat test... anyone have a negetive skinbiopsy but + sweat test.. curious.
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