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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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Search results

  1. J

    Visual Focus Problem with extreme light sensitivity and eye flashing

    Sorry delay in replying Ive been yukky. Myasthenia, well i am so,weak when at my worst, collapsed cant walk talk ect so they tried a few tests for myasthenia but negative, and a tensilon tests for myasthenia which was a bit positive so they treat me for what they call sero negative so give me...
  2. J

    For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

    Ive noticed an improvement in attitude in doctors attitudes in my local hospital in last few years, buGod knows what has elevated it, but thank God for it. because before it was abysmal.
  3. J

    For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

    I read with interest your reply re severely ill , are you in uk? I have bee to hell and back with treatment in uk for twenty five years although i HAVE noticed a major change in attitude in our hospital in last five years. Thank GOD
  4. J

    GP Involvement in Diagnosing Symptoms of ME that could be caused by Adrenal Problems

    Hi. Noticed you mentioning awful menopuasal symptoms. My menopuase was ten years ago yet i am having appauling hot flushes sweats disturbed sleep pattern etc. did anything help these particualr symptoms for yiu? I too was give. Steroids which made everything worse.
  5. J

    NHS (UK) CCG have taken away my T3 treatment

    Interested in your in normal range but not thyroid thing....my tyroid is always in normal range but i notice the numbers each time are higher. And i have some thryoid symptoms. Any advise? My thyroid ths numbers started in the 1.5s ten the 2.5s and now 3.5. They tell me the numbers do go up and...
  6. J

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    has anyone used rhiodiola rosea?
  7. J

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    I noticed your comment regarding alpha lipoic acid, in what form did you take this, i have heard itmworks well for neuropathy which i have.
  8. J

    Visual Focus Problem with extreme light sensitivity and eye flashing

    Hi, well, they lazered the torn vitreous back to the retina in both eyes and said its due to age...ha ha. But, I am still having flashes and blobs and blurred vision, I feel really yuk when I look at things and am very sesntivive to light especially when i move my eyes, or when the light...
  9. J

    Positive ANA Screen ="Tests are perfectly normal" ??

    Hi did you ever resolve the ANA issue? i too had an ANA positive but they never found out positive to what.
  10. J

    causes of muscle twitching/spams

    Could be thyroid related, or potassium. I think also when we are extra tried or stressed the nervous system struggles to work efficiently and shoots of charges,
  11. J

    PACING (a question)

    What is AT?
  12. J

    Visual Focus Problem with extreme light sensitivity and eye flashing

    Did your husbands eye problems resolve ? I had flashing lights, which I put down to the M.E, but were discovered to be a vitreous problem. Always see someone of you see flashes of light or floating objects ect, dont alway assume its the neuro probs.
  13. J

    Potassium burns

    Its very interesting to pick up this thread as I had low potassium blood test this weekend after my heart rate went funny, sinus tachy with ectopics, i had episode the week before and ignroed it, then it started up more severely this past weekend so I sought help and blood test showed low...
  14. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    yes, I know of Oxford and had my myasthenia antibodies tested there. Unfortunately you can only get antibody tests done through the NHS in UK.
  15. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    That what I thought! We all carry hundreds of antibodies. It would be impossible to scan for all. When you get a positive ANA they may look for a specific but in UK testing for any antibody isnt routine. And youd have to have high numbers for the UK medics to take much notice anyway.
  16. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    Ok.to be honest i am not bothered at all by the low potassium, its easily addressed, but i am bothered as to why it drops, and, to why some doctors bother with it and others dont.
  17. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    How do you address the low,potassium?
  18. J

    Abdominal fatigue

    PS Can you sit up properly, I find it totally impossible when this is at its worst. I feel like i need to hold on to the area.
  19. J

    Abdominal fatigue

    hello, YES! I am suffering with this exact symptom as one of many nasty little issues this relapse, does yours feel like your abdo muscles are literally ceasing up? The only thing I have heard simiar is the M.S hug.
  20. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    Do you have low potassium? What symptoms do you experience? I was getting fast jumpy heart and ectopic beats on ECG but no heart block or anything, they just just put it down to a low potassium. What I didnt understand was they have never bothered before to treat a low,potassium at same numbers...
  21. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    But my renal function tests are ok, just the potassium was low.
  22. J

    High daily doses of vitamin D3?

    I have been using Solgar Vit D3 for some time but you do have to be very careful not to overdose on Vit D like Justy says,
  23. J

    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    Completely different subjct but do you know of any connection between sro negative Myasthenia and Severe M.E? I as because I seem to be alone in this. I have recently been treated here in UK hospital with my third IVIG five day course, for what seems to be atypical sero negative myasthenia and...
  24. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    How come they didnt treat a low potassium?
  25. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    Am i to understand in USA there is a panel which tests for all antibodies? here in UK they do one antibody at a time!
  26. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    Thanks, sorry my typing is not great. You certainly have a complex picture too. The best tests for any kind of sero negative myasthenia is a tensilon test I am surprised they havent done that with your history, maybe the other issues you have make it inappropriate. I have the heart issues of...
  27. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    How was yours treated, and, was there any explaination as to why your blood potassium dropped?
  28. J

    Atrial Fibrillation and ME/CFS

    Have you had a potassium test lately? Had an episode of prolonged elevated heart rate and ectopics and they said was due to,potassium drop.
  29. J

    Low potassium, heart arrythmia and ectopic/palps anyone?

    Has anyone had sudden episodes of prolonged palpitations and a corresponding low potassium?
  30. J

    Anyone with myasthenia trait, and/or had/having IVIG

    I would like to be messaged by anyone in the UK who has been told they have a possible myasthenia, with their ME. And also anyone who has had a five day course of IVIG in UK hospital? Also, anyone who has the ghastly hot feeling when they get weak. Alot to ask sorry but feel very isolatd and...