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About Raisin

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    Knitting, animals, spending time with friends, music

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  1. I smoked for many many years. I was able to quit the cigarettes but now I'm addicted to the lozenges ( ugh). One thing to keep in mind is that the gum and/ or lozenges can cause Nausea in many folks. Dysautonomia can cause GI distress all by itself. I understand the desire to try anything to feel better. In this case, we may be playing with fire. I sure wish we all felt better.
  2. How about....I didn't choose my underwear by the 'This is ER accptable' rule today! WTG!
  3. Some times when I actually do get off an elevator, my body keeps repeating the "landing" feeling for a few minutes afterward. I have to stand still or sit because I can't walk when I am "landing" every few seconds. Lol. Floor 9.....accessories....Floor 8 .....women's loungerie.....floor 7 ....men's suits....floor 6......Dear Lord...."
  4. Thank you diabeticgonewild. (love the name by the way). I will definitely ask when I see the neurologist the next time. I seem to be on the "see you in 3 months" wheel with all the docs so it will be a little bit but I do feel I need to advocate for retesting at some point as I feel it is better to be safe than sorry. Thank you for your wisdom.
  5. Jon6945, that is very interesting what you said about autonomic neuropathy as that is what the neurologist mentioned when he saw me. I thought he meant small fiber neuropathy and I told him my skin biopsy was fine but he explained how it is the autonomic fibers that are messed up. But, he did not add that as a diagnosis as far as I know. I will see him again and now I feel good about having some more intelligent questions to ask. I have said before that I used to pride myself on my ability to learn and understand these things but now I can't seem to grasp as much anymore. I remember in college
  6. Thank you Psalm. I am sorry to hear what you and Natop have to contend with. I am glad that there are good people following up with you. It's weird, I have always felt like there is something hiding in my body and that if I am just patient , (which I am not lol) , it will show itself and then everyone will see it plain as day. Maybe alot of pots patients feel this way. I know that everything happens at the right time . I would be agreeable to a cat scan as I have bad abdominal pain anyway. Last time I had this type of pain, there was air in the lining of my intestines. They didn't know where
  7. Thanks Natops! That is great information. And you're right. It seems that when it comes to antibodies, there can be alot of bewilderment. I don't seem to have any other antibodies showing themselves either so if they are " tagging along" , then they haven't told us what they are tagging along with and I think I have had every test known to mankind at this point. I don't have my follow up for a few months but your information will help me to ask the right questions. Symptom wise, I have Pots, hypovolemia, major blood pooling, small blood cell mass (?) , dizziness and weakness with leg ataxia a
  8. My new neurologist ran a paraneoplastic panel. Everything was 0 except Calcium Channel Type N antibodies showed up but were at the top of the normal range. I am wondering why they would show up at all and should I just "let it go" because they are in the normal range or should I advocate for future retesting to make sure they stay in the normal range? I am not freaking out about it. It just peaks my curiosity because so far all "causes" seem to remain a mystery in my case. Thank you for being there everyone!
  9. I asked my hubby to get these if he sees them. We are supposed to go to Bed Bath and Beyond so maybe I will pick some up. I use my cooling vest and like that alot also.
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