• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. I

    Abnormal brain MRI scan

    what do u mean by more thyroid?
  2. I

    Abnormal brain MRI scan

    thank you all for your responses.. I got worried as i am quite young so i knew it couldnt be age related.. I hear its very common in MS, i might go see the neurologist sooner than my next appt if i can get one.. Bit tough though coz he doest beleive in m.e
  3. I

    B cell count

    Hi all Just wondering what does a very low B cell count mean? Kind Regards, Ivana
  4. I

    Abnormal brain MRI scan

    Hi all, I've got no idea which category to put this under, so I'll write it here. I've just received my brain MRI results which weren't perfectly normal. I was wondering if anyone knows what this means: Conclusion: Several small non-specific supratentorial white matter FLAIR...
  5. I

    Tilt table test

    hi tania, nope i haven't seen it.. If u have the energy, please find the list for me.. I really appreciate it! Im desperately hoping something will help!!
  6. I

    what are the symptoms of xmrv?

    thanks for your replies.. Xandoff, i am in Australia so i can't use that list. I do have an ME specialist here, he put me on meds to treat it (beta blockers andflorinef) but they didnt help at all, so i need something stronger. Best wishes
  7. I

    Comment by 'Ivana' in 'Genetic testing results - SNPs'

    thanks.. Once u get the results, what do u do with them? ie. How can they be interpreted? Is there anything that helps this? Ive had my MTHFR tests done which showed moderate and high activity, but no idea what it means
  8. I

    Tilt table test

    oh i told him its a waste of time because he thinks it will help him find the real issue as m.e doesnt exist.. I alrady know what the real issue is. I do want to have it done tho as i have pots and OI. Im already on florinef and inderal but no help.. Hopefully theyll find smeting more helpful
  9. I

    Feeling of 'brain moving' in head

    yeah i had a lot of brain inflammation this month, and lots of cytokine storms as a result.. But the last time it was this sever, approx 12 months ago.. I didnt feel much inflammation. Weird! I find its ok if i'm lying down and not moving my head.. Its just an annoying position to be in all day...
  10. I

    Comment by 'Ivana' in 'Genetic testing results - SNPs'

    wow! where do you get all this stuff tested? what's the name of the test tequest? Is there anything that can help you with this stuff?
  11. I

    Feeling of 'brain moving' in head

    Hi all, Just wondering if anyone knows anything about a weird symptom I have. I'm not sure if I've posted a similar thread in the past so please excuse me if I'm repeating myself... my memory is shocking today! I keep getting this weird feeling that my brain is moving in my head.. and...
  12. I

    Tilt table test

    Hello all, Got another question for anyone who may be able to help.. My neurologist (who doesn't beleive in M.E) has decided to send me on a Tilt Table Test to test for dysautonomia (I have all the symptoms) to see what's "really" going on in my head. I told him it's a waste of time but he...
  13. I

    what are the symptoms of xmrv?

    thanks willow.. I tke florinef, electrolyte water, salt etc and sometimes its still low for days.. Who is dr bravo?
  14. I

    what are the symptoms of xmrv?

    Hi Kelly Thanks for that. Which doctor would be able to treat POTS/OI? My blood pressure yesterday was 70/49.. I felt like I was drunk and everything was spinning. My GP is aware of my blood pressure but hasn't sent me to any specialists. Best, Ivana
  15. I

    what are the symptoms of xmrv?

    Ok thanks. How do some people test positive for it though and say they feel better after meds? My blood pressure is so low that a transfusion has been suggested, but i'm scared of picking up things such as xmrv. I hear that blood transfusions are bad for cfs patients..?
  16. I

    what are the symptoms of xmrv?

    Hi all, just wondering if there are any specific symptoms of xmrv which could be a clue as to whether one may have xmrv or not? I would like to get tested but its expensive, so i was wondering if there are any particular symptoms to look out for best wishes ivy
  17. I

    Sleeping all the time?

    Im sorry to hear that.. I am the same.. The fear makes me soo much more sicker, i am in bed all the time and thats when the fear takes over.. I have only been able to work part time for the last 5yrs.. I was always calling in sick. Im also scared to be near my family, they want to put me n a...
  18. I

    Sleeping all the time?

    yeah same, but it gets worrying at times.. My symptoms started 5 yrs ago, but i was able to half function.. Ive been in bed for over a year now, thy finally came crashing down.. Hows about u? Any functioning in the last 12yrs?
  19. I

    Sleeping all the time?

    Hi Banksy, sorry to hear what u have had to go through.. I enjoy sleeping as well as i dream that i'm healthy.. I just get a bit woried when i sleep for excessive amounts of time.. I hope everything goes well and you will find help withthe meds!
  20. I

    Can computer use make symptoms worse?

    Hi Inky, Thanks for that. What is a theatre supply store? I don't go anywhere so I don't know what that it. Also, what is earthing? Ivy.
  21. I

    Can computer use make symptoms worse?

    sorry, what is an earthing product? I find that comp use makes me yawn heaps and then i have to sleep. Once i get up,i'm still really drowsy.. It wasnt like this til a few weeks ago when i started developing cytokine storms
  22. I

    Can computer use make symptoms worse?

    Thanks, girls. Esther, ur right about about the pushing.. I tend to do it just to feel 'normal.' i have to wear sunglasses all the time, my monitor is already on the darkest it can be. Without glasses, my vision and 'brain moving in head' feeling is bad.. Yesterday we had an earthquake and i...
  23. I

    Can computer use make symptoms worse?

    thank you,all! Tania, whats EMF sensitivity? Im not familiar with that. Calathea, i wear normal sunshades, light brown in colour, but yes i am veryyyyyy photophobic.. My pupils even move so i have to wear sunglasses all the time.
  24. I

    Can computer use make symptoms worse?

    Hi all, Strange question- can computer use make symptoms worse? I find that my neurological symptoms are worse after I've been on the comp, and I need to sleep more. Is this normal? Anything that can treat it? I wear sunglasses whilst on the computer, but still, not much help. Best wishes, Ivana
  25. I

    Sleeping all the time?

    Thankyou all for your replies. I did have bronchiti two weeks ago so maybe thats made me worse. The worst thing is that a basic blood test doesnt pick up on these things, so we never know what we have. The glands in my neck are sore so i'm wondering whats going on inside. Sushi, u mentioned to...
  26. I

    Sleeping all the time?

    oh thank you, heaps, i'd forgotten about that. Btw sushi said u might know of a place here in Oz that does IV oxygen therapy? Cheers I.
  27. I

    Sleeping all the time?

    i got blood out the other day, no infection... Kdm thinks i might have lyme, but that cant be detected in a normal test..i just tried my oxygenator, maybe it'll help ???
  28. I

    Sleeping all the time?

    i got blood out the other day, no infection... Kdm thinks i might have lyme, but that cant be detected in a normal test..i just tried my oxygenator, maybe it'll help ???
  29. I

    Sleeping all the time?

    omg i hate it, i'm literally yawning all day when i'm not sleeping. Ive been taking a lot of nurofen for inflammation.. Could it be that?
  30. I

    Sleeping all the time?

    Hi All I was wondering if anyone can help me out with something? I have been sleeping about 15hrs a day recently.. Not sure why. I know the illness is 'chronic fatigue' so sleep would make sense.. but I don't usually sleep this much. All I've been doing recently is lying in bed all day, with...