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lorrie

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About lorrie

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  1. Well, my trip to Mayo was very nice. I had a wonderful experience as far as they were extremely organized and I hardly had to wait at all for my appointments. Everyone was very nice and helpful. The doctors seemed very interested in what I had to say and they all spent lots of time with me. However, I am now more confused about my health. After having a POTS diagnosis for over a year, I was told I do NOT have POTS...I was diagnosed with Mastocytosis!! They also found a spot on my lung that they were pretty sure was cancer, but after a PET scan, they think it is Hystoplasmosis. They found a ble
  2. I have waited so long for my appointment at Mayo and it if finally almost here. I leave one week from Saturday!! I am excited and hopeful to get some good, useful information. I am also getting nervous about some of the tests they have scheduled. Most of all, I am upset because I got a new schedule in the mail today and I have been changed from an appointment with Dr. Low to Dr. Sandroni. I really wanted to see Dr. Low because I have heard great things about him. I pray that Dr. Sandroni is just as good. It sounds like Ernie is having to wait a couple of weeks to get news...I was hoping to kn
  3. I was happy to see you posting. I have wondered many times how you were doing. Good news is always great to hear!! I'm so happy you are having a positive response to the therapy.
  4. For many many years now, I have had a very frustrating symptom. I would say that at least 95% of the time I feel like I have a volcano inside my body. I begin feeling so hot from deep inside and it doesn't matter what the room temperature is. Co-workers, family and friends absolutely don't understand me. I wear short sleeve tops all year round because I am naturally hot natured, but this is different. The worst part of it is that I begin coughing when this happens. I really have trouble at church because of this. I start getting that hot feeling and start coughing and can't stop. I actually ha
  5. Please let us know as soon as you get home...I can't wait to hear about your experience. I hope you have a wonderful trip and gets lots of answers you are looking for. I leave for Mayo on March 6...can't wait to get there!! Hugs to you.
  6. Today started very badly...I woke with a horrible headache and have been dizzy and sick all day. I was feeling so guilty because today is my Anniversary and I knew I wouldn't feel like going anywhere for dinner with my husband like he had planned. I had also planned to bake heart shaped cookies with my daughter because she wanted to surprise her daddy with them. Instead I found myself needing to lie down and feeling like a horrible mom/wife. Well, my daughter who is 9 is very protective of me and my feelings. She must have sensed that I was feeling down and guilty because she secretly called m
  7. I went to an ER with severe chest pains and the doctor (who didn't know anything about POTS) said I was having stomach problems and the next thing I know, a nurse was holding out a cup of liquid and told me to drink it. She said it was a "Mylanta cocktail". I thought it was strange to be drinking Mylanta, but did it anyway...little did I know it was mixed with lidocaine!!! I have had previous poor reactions to topical lidocaine. First off, I didn't know you could ingest lidocaine and the taste of it mixed with the Mylanta was horrid. Secondly, they did not make me aware BEFORE I drank it that
  8. Doctors make so many mistakes...we would probably be shocked if we knew just how many mix ups are included in our mountains of medical files. I'm sorry this happened and I'm glad you sent the FAX...please let us know about the thyroid thing when you learn more. We're thinking of you!!!
  9. I don't mind but my info. is at my parent's house at the moment. I found the hotel by going on the Mayo website and clicking on lodging. Have you been on that site? It has some good information. I think the name of the hotel is LaQuinta Inn...that sounds right. Maybe the difference in the information they sent you and what they sent me is that I am going through the entire POTS clinic workup and you are just wanting some advice from Dr. Low. Also, the fact that you are private pay may make a difference. I have good insurance and thankfully only have to worry about copays, lodging, and eating.
  10. Ernie, When do you go to Mayo? I am going in March and they sent me a packet with tons of info. including a detailed schedule of tests I will be having. The schedule is hour by hour with details of where to report to and what time each test or doctor consult will happen. They sent instructions as to what to bring with me as well. The letter they sent with the packet said I am going through their "POTS Clinic". I am scheduled to be seen by Dr. Low as well as other doctors and have been assigned a nurse practitioner who will follow my case all the way through the process. They gave me her name
  11. I wanted to let everyone know how this situation played out...I went into work today and the lady who had tried to explain to the other how certain scents affect me met me at the front door. When she realized the boss sent me home she was furious!! She talked to the boss about it and told her that it was bothering everyone but it was a matter of health for me...she said if something wasn't done, she would take it further herself. She said the boss called the air freshener queen into her office and wrote her up for the way she handled herself. At first, she refused to sign the write up, but dec
  12. I have started working 1/2 days while on FMLA leave and today was tough due to a co-worker. We work in a small unventilated area for a portion of the day and she kept spraying air freshener every few minutes. I calmly told her it was bothering me and she said she just had to use it because the room was stale smelling. I tried to ignore it, but I started coughing and getting dizzy and felt nauseated. I went outside to get some fresh air and that might have helped except that it is 23 degrees outside and that set my other symptoms into overdrive. Another co-worker realized what I was going throu
  13. My POTS doctor said he hears this complaint alot from other patients. I have trouble washing my hair and my husband has to help me dry and style my hair...thank goodness he does a decent job of it. My arms feel as if they weigh 50 lbs. each when I raise them. I first noticed this when I tried to paint a ceiling...NOT a good idea. I had not be diagnosed yet at the time and my sister thought I was trying to get out of the work. I have not found anything that helps with this and my doctor had no suggestions either. I guess I will just avoid raising my arms above my head.
  14. I love to snuggle up my daughter and just talk to her...she has an amazing sense of humor and a big vocabulary...I look into her innocent eyes and listen to her take on life...instantly makes me thankful for the good things I have. We usually end up with a big laugh and hearing her giggle is the sweetest sound on earth. If she is at school, I curl up on the couch and watch a favorite show while my dog lays at my feet (a great foot warmer) and try to ignore all the things that need to be done around the house.
  15. Thank you for the link...I read the entire thing and found that I have many of the symptoms also. My POTS doctor and my cardiologist have both mentioned that they think I have CFS and have put me on Lyrica for the pain. It has helped some, but mostly just the headaches. I still have muscle pain that becomes unbearable at times. I do believe POTS and CFS are closely linked.
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