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About tpapik

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    Advanced Member
  • 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,
  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 .
  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 Pancrea
  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
  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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