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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. waif

    Poll: Do you have a partially empty sella on your brain MRI?

    Also Im nervous hedsers might think bc Jennifer breas surgery helped her, it would help them. She has stated she's zero hypermobile, never ever hypermobile. I am. Its very obviously genetic on my dad's side. You literally have to sign forms when seeing Dr Bolognese or Henderson saying you...
  2. waif

    Poll: Do you have a partially empty sella on your brain MRI?

    Nice, I was about to make this thread. Just brief bg on me (I have nerve damage in my hands so you guys will have to excuse lazy typing) I have heds. 8/9 Beighton and MVP, hyperadrenergic pots attacking my diastolic BP much more than my hr, hypovolemic pots. I didn't realize how bad it was...
  3. waif

    Washington Post Article: -- A doctor struggled with a rare, incurable syndrome [Ehlers-Danlos]. Now she helps others overcome it.

    I have heds. It's just poor wording, I'm sure they mean "manage"...It sounds like just giving good physical therapy which I had for almost a year. It's "saved" me but I'm still bedridden all day.
  4. waif

    Covid Booster & Flu Shot Tommorrow

    Im trying to get carpal tunnel surgery and I got the booster thinking I'd have ~6 months low-risk of catching omicron 🤦‍♀️ This makes me nervous https://www.nytimes.com/2021/12/23/world/middleeast/israel-vaccine-4th-dose.html Too many shots causing "immune system fatigue"
  5. waif

    Have to drink tons and tons of water or I'm dizzy

    Another thing that happened, I developed pretty severe dry eye syndrome. I'm jealous of anyone who can stare at a screen for hours. It kills me For awhile I was worried I have sjogrens but my mouth is zero dry T2 diabetics are only thirsty when their blood sugar is unstable right?
  6. waif

    Have to drink tons and tons of water or I'm dizzy

    I have pots but the thirst I feel like is disproportionate to my pots...like when I was younger my pots was a billion times worse my blood pressure got low. Now it's on the high side. I didn't feel this urge to chug water. I didn't have horrible pain tho! I developed horrible neuropathy in...
  7. waif

    Have to drink tons and tons of water or I'm dizzy

    Oops sorry sx = symptoms, ir= insulin resistance, heds = hyper mobile ehlers-danlos syndrome I have numb hands so super lazy typing Yes I drink electrolytes and they don't come back low unless the lab work is faulty
  8. waif

    Have to drink tons and tons of water or I'm dizzy

    Hi all, Im extremely thirsty all the time and I have to drink a LOT of water, frequent urination. At night I pee nonstop, never wet the bed or even come close. Just the need to go dramatically increases. I have h-eds. Is this a CFS sx? I feel like I have to drink water moving around or...
    • waif
    • Thread
    • blood volume diabetes insipidus orthostatic intolerance
    • Replies: 19
    • Forum: General Symptoms
  9. waif

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    His prolactin levels are also elevated but I realize that's like an entirely different issue probably. I see a bunch of telemedicine doctors. But I'm worried about him receiving blood work at home because of covid. I'm in Georgia and it's very easy to receive the vaccination, I said I was a...
  10. waif

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    Okay I'm trying to see how we could get him to try ravicti. I'm worried that would make him do some elaborate genetic test first which he obviously can't do at home
  11. waif

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    I forwarded this information to him that's *very* useful, do you know how to find a good telemedicine doctor? I'm worried that they will want to see him for the initial visit in the office Money is not an issue. He'd pay a lot for a good telemedicine doctor.
  12. waif

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    Hi @LegallyRed I hope you're still browsing these forums, I know it's been a while. I'd love to hear updates. my friend's condition has deteriorated to the point where he can't get up and go to the bathroom or to get food. And I don't live near him to help. We're actually fearful to go to...
  13. waif

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Just an update... I couldn't get hydroxychloroquine. It's hard to ship I bought a nicer insurance plan though so if I get sick I'm going to ask for it I'm listening in on a conference call with my old job with a university hospital. They said hydroxychloroquine might help because it treats...
  14. waif

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    hydroxychloroquine /= chloroquine you can die from overdosing on a lot of things, like caffeine pills. OD does not mean the drug is toxic but that's besides the point, they're different drugs Not to get political on here but that article is clearly biased against trump (who I'm not a fan of...
  15. waif

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Just panic bought hydroxychloroquine from Indianpharma.co using Bitcoin (thanks to this list) I'll post how it goes. Worst case scenario I'm out 52$
  16. waif

    Can you get a biopsy for sfn in your arm?

    I don't have the labs handy but one time they tested completely out of the bottom of the range both c3 and c4. The other two times it was in range but at the very bottom. Both c3 and c4, not just one. I haven't tested them in over a year though. The nurse read the results on the phone and...
  17. waif

    Prepping tips for coronavirus if you're low carb

    Thanks for the replies. I should add, my friend is nowhere near me or I would try to help him. Here's an article about how long coronavirus lasts on surfaces https://www.sciencedirect.com/science/article/pii/S0195670120300463 "Middle East Respiratory Syndrome (MERS) coronavirus or endemic...
  18. waif

    Can you get a biopsy for sfn in your arm?

    sitll waiting for my results, i'm nervous it's taken over a month and i lose my health insurance soon
  19. waif

    Prepping tips for coronavirus if you're low carb

    Hi all I'm mostly writing on behalf of my friend He's isolating himself and needs tips on how to hoard food so he has to interact with humans as little as possible. He eats meat and vegetables, healthy, low carb Also do we know how to make sure the virus doesn't transmit via food? Like if...
  20. waif

    Can you get a biopsy for sfn in your arm?

    Thanks to you guys I'm getting my arms biopsied this Tuesday. I'm ecstatic. I will be happy regardless of the results, if I have it that will give me a peace of mind and if I don't have it then that will give me peace of mind.
  21. waif

    Can you get a biopsy for sfn in your arm?

    I don't agree with the myologist... like even if there's no treatment I still want to know so I can rule out other things. Great point, need a super specialist who's intellectually curious.
  22. waif

    Can you get a biopsy for sfn in your arm?

    Gah sorry quick question http://neurology.emory.edu/research/laboratories/neuromuscular/index.html Muscle biopsy....this doesn't sound like they test for small fiber? Also I did a reverse search for doctors who have ordered therapath. So I have one appointment with doctor who uses Emory and...
  23. waif

    Can you get a biopsy for sfn in your arm?

    Thank you. It sounds like, even tho it's a bit oversimplified... it's definitely better to get a leg biopsy than nothing at all. I'm not going to a SFN center (in the us). I could look around but my health insurance won't last long. So I'll mention my arm but try not to stress if they only...
  24. waif

    Can you get a biopsy for sfn in your arm?

    Blah, well it turns out I already asked my rheumatologist who I like for a biopsy. Years ago. I forgot. He just referred me to a neurologist. unfortunately I'm only going to have health insurance for like a couple months so I scrambled to get an appointment with a new probably crappy neuro...
  25. waif

    Can you get a biopsy for sfn in your arm?

    Omg phew. I was googling on my phone and all I saw were freaking feet. I'm going to show this to him... possibly try a different rheum. Or maybe a neurologist. Thanks so much
  26. waif

    Can you get a biopsy for sfn in your arm?

    I'm too tired to type up my entire medical history but my entire hand and portions of my arms have been numb for 10 years now...like 24/7 I'm scrambling to get a biopsy before I lose my insurance. But now that I'm Googling it I just see they talk about taking a sample from leg/calf etc. I...
  27. waif

    has anyone tried plaquenil for idiopathic SFPN?

    funny you mention blood flow because basically my hands went numb in ~march 2010 and then randomly one day in August they regained sensation and around that time the veins in my hands were bulging. They went numb again and stayed that way but I remember being obsessed with blood flow. I...
  28. waif

    has anyone tried plaquenil for idiopathic SFPN?

    Like rn my thighs have needles Compared to my hands it's not as pronounced The burning I relate to A LOT. When I have bad flares I dunk both my arms in ice water
  29. waif

    has anyone tried plaquenil for idiopathic SFPN?

    I get symptoms in my feet but my hands are 24/7 I also have IR (which I control now... back when my hands went numb I had no idea)
  30. waif

    has anyone tried plaquenil for idiopathic SFPN?

    I can't afford a biopsy yet but I'm not in a rush bc I don't see great tx options... Just curious if anyone's tried it. I've had extreme pain in my upper body and numb hands for for almost 10 years now. "When the cause hasn’t been identified, treatment focuses on managing symptoms...