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BallroomA

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Everything posted by BallroomA

  1. Congrats!! I just delivered my little miracle in November. We had a natural labor and things were good for the first 6-8 weeks. I was really worried about how my body would react and discussed my options with all my doctors. I had a lot of complications during pregnancy and I was mentally prepared for a c-section. I've been in the midst of a flare up which I'm sure lack of sleep isn't helping.
  2. I found I had a lot of problems with birth control...heavy cramps, breakthrough bleeding, my periods would last 2-3 weeks super heavy. Currently I am on YAZ and Yasmin...started on Yasmin (YAZ is the new version of it so doc had me try that for a few months) I like Yasmin better then YAZ I found this month on the YAZ I had a heavy period then normal...but all in all its better then what it use to be. Just an quick question has she been checked for endometriosis, cyst, and even cervical cancer??? I was 19 having problems and the docs kept brushing it off..turned out I had endometriosis and stage 1a cevical cancer. Good Luck
  3. Ok sorry just had to ask you guys!! I am a senior in Criminal Justice at the University of Toledo and a couple of days ago I meet up with my group to work on a project....well I wasn't looking so hot and one of the guys in my group asked if I was ok...I said yea I just have POTS and got prepared to explain myself when he said HIS MOTHER HAS POTS and she was diagnosed in a clinic in TN. My question is just pure curiousity but is his mother on these boards??? If so PM me or respond to my post please...lol...I just thought it was funny cause seriously WHAT A SMALL WORLD...his girlfriend and I also see the same Gyno/Oncologoist her fore endometriouis me for cervical cancer Crazy huh...THANKS
  4. I have MVP and POTS...my MVP has showen up on about 6 of my 8 echos the past year. It actually was so bad twice that they started freaking out when they saw it!! But of course my cardiologist didn't think my MVP was a big deal...so no drugs for that!!! I fit the profile am 5'9 an ex ballet dancer and professional ballroom/latin dancer I have very long limbs and am super slender.
  5. just an FYI with this...I was told by a doctor in Texas (he is amazing deals with hormones and strange illnesses) that the normal range is so broad that one cannot trust it. Whats normal for me isn't normal for you...he thinks we should all get regular blood screenings every year and keep on file what levels we are. Oh an also drbob.com is a great website with tips on test....I am allergic to Gluten, Yeast, Wheat I eat organic foods and still have problems but I have noticed I am a lil stronger then before
  6. Hi - My older sister was diagnosed with a pineal cyst a couple years ago (she's 24) I was recently diagnosed with one along with abnormal tightness down my brain cords (not sure if that makes any sense) But anyways the point of this post is MAKE SURE you are talking with a good neurologist/surgeon. My sister went to the Mayo Clinic and then got a second opinion from a top doctor in New York. All told her that monitoring the cyst was key becuase in order to do surgery to get to the cyst its like playing a game of LIFE...one slighly miscalulated move and the lights go out. All her surgeons HIGHLY advise anybody doing surgery UNLESS a change in the size or shape of the cyst OR you cannot roll your eyes upwards. Hope this helps and good luck!!!
  7. Ok I know alot of us get this but wondering if any of you noticed it worse around certain times of the year??? Its been getting cold up here at nights and I am finding when I wake up in the morning or come in from outside I am having the pre-fainting spells? You know the stars in the eyes, spinning sensation, tachy attacks, with the numbness starting to shoot through your body. Already I am in sweaters to try to keep myself warm..but do any of you find you get worse in the cold months? Also what do you find helps? Thanks so much
  8. I am from MI (we live on the ohio/michigan border) my dad works in Toledo, OH so I basically grew up there...go to college there now. My cousin whose also from Toledo, OH has really severe POTS among other things. My aunt thought of the ohio connection awhile ago....always thought there might really be something to it!
  9. Sorry to hear that....I also have horrid neck, shoulder arm, finger pain. It comes and goes....I guess to a point most of us just accept these things. I will wake up some days feeling like somebody broke my neck and back in they morning then tried to glue me back together ( I know it sounds strange) All I can say is drink plenty of water and on days your real sore don't overdue anything! Hope you find some answers BallroomA
  10. Emily - No offense taken don't worry. They ran me for HPV but found none, they are thinking my immune system is so low that its caused a mutation? Not sure if I believe that as none of this makes sense to me...but oh well. I go to see my doctor tomorrow mornig so maybe I will learn more then! Thanks everyone!!!
  11. Hello all....hope everyone is doing great in the heat! I know I hate it!!!! Anyways don't know if this somehow correlates with pots in anyways but figured I would throw it out to all you. In Jan I had an abnormal pap..well after a few more abnormals and a 2nd opinion I had to have a loop cone biospy done because their were high levels of precancerous cells. The doctor believes he got everything and said I more then likely got these cells because of my LOW IMMUNE SYSTEM????? Have any of your doctors told you all you have low immune systems...I mean I always do get sick so maybe there is something to it. A rant to go along with this...During my last biopsy I had to go under a general I had my first general a couple of months ago and did HORRID coming out of it. I wouldn't wake up and my bp was all over the place it took me about 6 hrs to actually wake up after surgery. My mom was with me and we told the anesthisologist about my issues. When I got out of surgery in recovery I heard everyone telling me to open my eyes and I was in that fog...well the nurse was there and she said I had to stop shaking that I was delibertly making myself tremble and shake in order to stay skinny!!!!!! I told her I wasn't shaking and I couldn't feel my face she told me I was just fine my BP and HR were normal and I shouldn't complain. They hadn't let my mom back and I asked where she was....she finally I guess told the nurse to try to stop her she was coming back to see me and came back. My mom took one look at my BP and HR and told the nurses something was wrong I was shaking like a leaf my BP which normally is really low was 88/118 and my HR was 78 when normally its in the 50's or 60's if I am laying around. The nurse told my mom I was fine and had to go home....so I went home! My mom and sister are both RN's, I came home and slept didn't feel right for about 3 days, it just amazed me that a NURSE would say something like that to a patient I was seriously appaled and wrote a letter to the hospital. Thanks for letting me vent! BallroomA
  12. No I have never been anesthetized before But whenever I am in the hospital like when I had my tilt, other test ran, etc and they put me in a IV drip my BP DROPS!! I am having my surgery done at the hospital on the 25th (week before my finals) they told me I will be outpatient which completly shocked me. The doctor that treated me for pots (Dr. Fouad at Cleveland) has no idea I am having surgery don't know if she would be a help anyways (kinda hard to get a hold of). Its been weird cause my BP has been actually high these last few weeks ever since I got this diagnosis. Thanks for all the well wishes!!! lots of love Ash xxoxxxoo
  13. Hey everybody! Sorry I have not been here for awhile....hope you are all doing better now that spring is coming. I am always worse in the winter and summer but spring and fall I tend to agree with Well I recieved some bad news...they discovered stage 1 cervical cancer so I have to get it removed (which is good news since they caught it early) but also I have to have a laproscopy done. They are going to have to put me OUT completly which makes me nervous 'cause I am scheduled as an outpatient and I just don't think my body will react well to being put out and surgery an all that....I mean I can hardly handle any sort of medication as of now because I have HORRID side effects. I have to take baby meds when I have a cold cause the grown up stuff makes me so sick. SO my question is have any of you had a surgery where they put you under?? How did you react? Thanks everyone!! Love ya Ash
  14. Its just been a horriable week!!! School started back and I am actually taking it somewhat easy this week...but the stress of being back in school has already made me more then a lil attacky. The icing on the cake though is that Friday (2 days before school started) I went to meet my mom for lunch, I was walking out of my house to the car when my legs just completly gave out and down I went! Well, I blacked out of course and awoke to the taste of blood and my body just shaking away. I reached up and felt blood just ozzing from my face. None of my neighbors were home (of course) and my fiancee had just left. Well I got up and tried calling my mom, no answer, called my fiance and told him my face was bleeding (he FLEW home). I made it into the house and grabbed a cloth then layed on the kitchen floor. I ended up in the ER with a head gash and a concussion. Ever since then my head has been pounding and I've been so POTSY, I HATE IT. I had been doing quit good but no more no its back to the fainting, palpatations, headaches, shakes, muscle tingles, you name it. sorry just had to vent somewhere....I know you guys at least understand. BallroomA
  15. UGGS!!!! OMG my parents just bought me some....I wear them everywhere (SO WARM for my cold feet) I have the chills 24/7....I lived in FL for a year an would shake in 90 degrees, wear long sleeves and coats!
  16. Hey you guys...thanks! See I have alot of fillings and the date of when I got my first and my problems started relate (few months after). I was told about this from a Health Food Store...the owner had lead poisoning, I was telling him about all my CRAZY POTS symptoms, he asked a few questions, and then told me I might want to thank about getting tested for Mercury. I found this site..a scientist who actually had mercury poisoning (Docs thought he was crazy..sounds familiar) he wrote a book, its really good! http://www.noamalgam.com/#prognosis you might want to check it out...I am going to have a test done. They say the best test for Mercuy poisoning is a Hair analysis, blood and urine can have false results. Thanks again
  17. So I was doing some research on syptoms and I noticed something...have any of you been tested for Mercury Poisoning??? The syptoms are VERY SIMILIAR to POTS....and its another of those diagnosis that doctors don't give out often. It can be caused from FILLINGS (silver) in your teeth....just asking I am going to get the test done checking to see if any of you have. Thanks!
  18. I would love to come finally meet you all.....I live about 2 hrs north but if its a weekend and the weather is good then YEP I BE THERE!!!
  19. I had white spots, and my neuro (failure of better words) was a complete *** who didn't answer my moms questions and told us to just "Trust HIM he is not considered the best neuro in Toledo for nothing" I also experianced slow and sharp wave activity was seen in the theta frequency band over the left hemishere, with phase reversal at T3 and occasional equal potentiality at F7-T3. They did my EEG because of my abnormal MRI and CAT - The nuero decided that I was not a seizure type patient after my extensive EEG came back normal
  20. OMG thats great news for you....yea its nice when we have stuff on paper then when Doc's look at us like were nuts we can go "See I do have a reason" Hope insurance covers and GOOD LUCK
  21. "We are a POTS family get up everybody and sing! Everyone can see were together as we FAINT on by" Everything will be ok....trust me.....I spent last week in that dark cold musty hole just wanting to die. Crying my eyes out on my fiance, apoligizing for being sick and not able to do everything most girls my age can do. I don't want to take the pain anymore, the fatigue, the glances from people who don't understand that I AM SICK I cannot walk up those stairs, I cannot make the trek across the parking lot in this weather. Life gets so frusturating and its so hard to realize that you cannot be that perfect wife, or the mom thats so involved. But you know what even with everything that is wrong in our lives, we have each other, thats so important. An we also have something so many people here don't a chance to reflect on life, a chance to teach others that things may go wrong but life goes on and you have to find some positive in that future life and go on with it. I can no longer dance, but I can help in small ways to secure my love for dance in a younger generation. What do you love? How can you ensure that either your kids or others keep that love going? You can teach your kids compassion, you can curl up with them and read stories, you can spend quality family time together looking at nature, or just relaxing those are things alot of people don't have time to do. HUGS TO YOU email me if you want to talk about our miserable lives I'm always open to listening....I hope you see there is a light in our dark POTS tunnel.
  22. When I was in the Hospital last time I came back with white matter on my MRI by my brain stem and right frontal lobe, then I had two EEG's done both which came back "abnormal", also my brain cords were "abnormally tight". After I got outta the hospital the Neuro wanted me to come for more testing which I supposdly passed so they threw all the previous test out and said I was find Does anybody else have the white matter on their MRI's or abnormally tight brain cords???????????
  23. I wish I could be like some of you!! I use to be a morning person and night owl before I got sick!!!!! UP at 6 am in bed at 2 am no problem then But now ohhh I wish I could sleep till noon but alas I have college at 9:30 some mornings and I have to be at work by 10 am others....I find I go to bed around 11 or midnight and I wake up with my fiancee' he gets my coffee all ready goes to work at 7:30 am and I snooze till 8:30 or 9. Mornings can be horrid....but then so can afternoons....at night I get really bad headaches sometimes...oh the joys of POTSHOOD
  24. I completed high school through Clonlara (located in Ann Arbor, Michigan) they are amazing, and Compu-High which was the first ever on-line high school. I graduated early had an easy transition to college and absolutly loved it. Send me a private message if you would like more information ballrooma
  25. Pooh - I am so sorry. I just lost my last grandparent, my grandma three weeks ago. My fiancee was worried about me because it was during my last dance competition. My body was already under a lot of stress, I was getting attacks at the competition, and then she passed away Saturday morning before I was suppose to dance so we came home to the funeral. I still haven't recovered from it all an have had a major setback with large attacks and now I have a pressure build up in the right side of my brain an going down my right neck!!! So be prepared for your body to fail you in trying to handle the stress..... Again I am so sorry...my thoughts and prayers are with you an your family during this time and forever -BallroomA-
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