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ShakeyTheOwl

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    58
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About ShakeyTheOwl

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    On an Island in the Pacific Northwest
  • Interests
    Arts,(previous career full time),Wild and Domestic Birds (bird people are the best) , Music, Nature, Outdoors.
    Humor in large doses always welcome and appreciated!
  1. Hi Alex I have had this happen a few times from this medicine. (HR in 40s is no fun) Am fairly new to taking it, started in May. Initially it was finding right dose. Am finding 45 twice day is tolerable. What helped me was knowing in advance to lower dose if HR <50, increase as tolerated. (written on script) And yes, thank goodness this medicine is short lived !!! Also have been tested for MG and negative.
  2. Hello And yes , have the dry eye too. Just had plugs put in two days ago. (Plus restasis, artificial tear and ointment) it is no fun and uncomfortable Also am being monitored for pelledema (sp?) Regarding the optic disc.
  3. Delicious and perfect timing for sharing! Thank you!
  4. Initially ordered variety of flavors. Now I order box monthly. Typically average four tablets a day. They are convenient. As SeattleChris pointed out there are online deals. Also, these were recommended by the Neuro. I've found salt loading challenging via natural source and or tablet (very hard on gut) Nuun has been tolerable since dx in February of this year.
  5. Hi That would be challenge to order and find right size. Am wondering if any of the sport or athletic companies may be easier? Basketball ? CEP Type of sleeves or stockings?
  6. Hi Steve! Badhbt is correct, regarding science and answers. (took me a few years to grasp that there may not always be answers) I too see Dr. Thyerlie, and will state she is incredible and very respected and missed from the UW. She specializes in autonomic nervous system, and I believe this is they type of neurologist you want to see, one that understands this complex system. The TTT at the UW is also one you should look into if you are wanting diagnosis or rule out Dysautonomia. I had mine in January at the UW, great tech and staff, but not an easy test if you have Dysautonomia... (went through two and half years of heck trying to get a diagnosis, it was very frustrating, and not uncommon with Dysautonomia and it's sub types. at onset of illness it was thought I had a lymphoma and underwent so much testing/biopsy regarding) Dr. Thyerlie is fantastic and hope you can consider to see her, if anything a consult? You mention going to Europe ... She is originally from Germany, educated and has trained there and in UK, additionally to here in USA. She brings a big background of experience and education. Which is something I highly respect. Regarding that flushing? Can't say which specialist is best, but do read about folks with Dysautonomia that get this from different reasons. I have Skin Marbling, which has to do with the blood vessels and blood pooling. (red spider web like patterns with purple/red and yellowish hue to legs, purple/black feet/ hands) This was diagnosed via Neurologist. Hang in there. You've come to a great forum with incredible information and amazing members!
  7. Hi Just wanted to say your post is inspiring . Especially about effort to get out. Am sorry about your back issue, admire your strength. Not easy to deal with pain Hopng only the best from biopsy results too. Keep strong !!
  8. Was just thinking, the saying "it's a curly one" Would definitely apply to dysautonomia ...
  9. Hi! So sorry to hear lengthy process to diagnosis. Two and half years here, with a scare in beginning of possible lymphoma. Am glad you had good experience in Chicago, and hope something positive comes forth with your aviation cateer. The raynaud and blood pooling seems to be something a lot of us have . The sweat test for small fiber neuropathy, (qsart) also this neuropathy is type that many of us have too. Tons of incredible information here and awesome people. ((Btw- my fiance moved here from Auckland, NZ. Three years ago. Kiwis! Hope Chicago goes well for you))
  10. Hi! it is not easy at times. I too have rough periods of not having enough physical or mental strength (brain fog) and am working daily on keeping strength, via recumbent bicycle, extra steps outside (walking) aggressive standing excercises, compression stockings, etc. Please know you are not alone, this comes with many emotions that sometimes feel more overwhelming than physical. (at least for me it does)
  11. Hi Margiebee! yes, have had this similar trouble of blurry vision. Just went through very lengthy testing and appointments with opthomologist specialist, and now treating the "Dry Eye" syndrome which is common with some of the sub types of Dysautonomia. This "dry eye" can cause blurry vision. Am hoping by following this treatment plan that it can help. (drops, ointment & prescription drops) I hope you can find solution/answer to help, for it is a nuisance.
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