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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. Lindberg

    Mitochondrial DNA discovered to be emitted by cells as danger signal

    http://www.sciencemag.org/news/2018/01/white-blood-cells-launch-dna-webs-warn-invaders
  2. Lindberg

    Temporary paralysis I need your Insights

    I guess one needs to meet the right person in order to get a thorough testing. It's frustrating to say the least. It takes quite some time before one finally gets tested and then it's not done like the experts says it should be done... Anyhow, I hope you will get some answers one way or another!
  3. Lindberg

    Temporary paralysis I need your Insights

    It should be an exercise test measured by CMAP (Compound Muscle Action Potential) instead of a regular EMG in order to find channelopathy. From what I understand this can be done through RNS, repetitive nerve stimulation. Was that the kind of test you had? I had a regular EMG which didn't...
  4. Lindberg

    Temporary paralysis I need your Insights

    Exactly!
  5. Lindberg

    Temporary paralysis I need your Insights

    @Jenny TipsforME, I have come to learn that some people get a seronegative MG diagnosis if they show problems at the RNS, repetitive nerve stimulation, and if they respond well to medication. But then one needs to meet a doctor that would like to examine further if the test is seronegative. You...
  6. Lindberg

    Temporary paralysis I need your Insights

    @Jenny TipsforME, I know what you mean since it's the same for me. It's like I have become better in my ME over the years but I am getting worse in a neuromuscular way - and it really bugs me not to know what causes it. The paralysis episodes during viruses are getting worse and I am more...
  7. Lindberg

    Eyes Drooping. Help!!!

    @Webdog, then there's two of us! My eyes completely close as well and it can happen on a number of different situations. I need to let them rest before I can open them again, to force them is quite impossible. I'm wondering if it might be that I have both MG (or LEMS) and ME, I have recently...
  8. Lindberg

    Temporary paralysis I need your Insights

    Regarding D-vitamin, calcium etc are there probably a lot of things that needs to be in perfect level and balance in order to reduce the episodes. It's quite a complex picture and a lot of overlapping with other conditions - not at least POTS. One has to learn ones own triggers to avoid episodes...
  9. Lindberg

    Temporary paralysis I need your Insights

    @Jenny TipsforME that's interesting because eventhough I can have an episode of myotonia/PP during the summer, it is much more seldom than during jan-march. It is a pattern that repeats every year. I have thought it might be due to lack of D-vitamin but never read anything about it regarding...
  10. Lindberg

    Is it hard to convince docs to give IV saline?

    Thank you, @Hip - I will look into that! The paralysis episodes comes so quickely so it would be good to have things that helps nearby and ready. The ER in my town nowadays knows what to do if I have to come in without being able to speak or move but it would be better to have something at home...
  11. Lindberg

    Is it hard to convince docs to give IV saline?

    Thank you @Jonathan Edwards for replying. I guess the body works constantly with sudden electrolyte adjustments in respons to a lot of different things, so the subject is quite complex. (Even if one should leave any autoantibodies out of the question.) Many people with ME seems to have to pee a...
  12. Lindberg

    Is it hard to convince docs to give IV saline?

    @Jonathan Edwards, you mention above that calcium causes rigidity - would that be too low amount of calcium or too high? Or perhaps in relation to something else? And another question if you have the time - if POTS is about autoantibodies towards the autonomic nervous system, what happens with...
  13. Lindberg

    Temporary paralysis I need your Insights

    Yes, I was surprised how good it was - just wish every neurologist would know it by heart... Or, at least be interested in reading it! ;)
  14. Lindberg

    Temporary paralysis I need your Insights

    @Jenny TipsforME, have you read this paper? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4233647/
  15. Lindberg

    Temporary paralysis I need your Insights

    Thank you @Valentijn! Can I email you? I would love to get feedback on some more mutations... With rsnumbers this time. :)
  16. Lindberg

    Temporary paralysis I need your Insights

    I'm searching for some clues among my 23andme testresult - eventhough I know they don't test for PP or myotonia. I came across some mutations that I found interesting: RYR1 heterozyg (-3), CARS homozyg (1), SLC6A20 homozyg (0), SLC36A3 homozyg (0), ABCB6 heterozyg (-3), ABCC6 heterozyg (-3)...
  17. Lindberg

    Temporary paralysis I need your Insights

    Thank you, @Jenny TipsforME and @Valentijn! Only wishes things would be easier to find out... Can't wait for research that can explain what happens during paralysis. For me it somehow seems connected with the immunsystem and dysautonomia - but time will tell...
  18. Lindberg

    Temporary paralysis I need your Insights

    @Valentijn I understand that you have developed an analysisprogram testing for rare diseases? Do you know if it shows any type of genetic mutation regarding periodic paralysis? If the raw data comes from 23andme?
  19. Lindberg

    Is it hard to convince docs to give IV saline?

    https://projectreporter.nih.gov/project_info_description.cfm?aid=9207020
  20. Lindberg

    The Times covers ME/CFS today with two items (Nov 2, 2016)

    Even if Crawley et al are now talking about ME being biological, the true biomedical researchers could still make a clear statement about CBT/GET. In the Danish paper Politiken researchers from Griffith University and Ola Saugstad from Norway spoke out - so it can be done. It needs though to be...
  21. Lindberg

    The Times covers ME/CFS today with two items (Nov 2, 2016)

    I truly feel it is time for our biomedical reseachers to come together in a pressrelease or newsarticle - to publicly take a stand against the biopsychosocial view and research on ME-patients. This needs to stop and needs to be explicitly and publicly expressed.
  22. Lindberg

    ME/CFS Test? Can you raise your legs when lying down?

    Thank you, I didn't know about the difference but read about it now. I have had such good effect anyway (but it takes 6 hours before it kicks in) so I never thougth about it. Now I will definitely try the other kind! :)
  23. Lindberg

    ME/CFS Test? Can you raise your legs when lying down?

    @Dechi Yes, it's Ubiquinol: "Bio-Quinon Q10 Gold", Pharma Nord. 300 mg per day, sometimes more sometimes less depending on what I'm doing that day. It hasn't made me all well though! It's not like I don't still suffer from PEM. Pacing is still very much needed. But it has helped me raise my...
  24. Lindberg

    ME/CFS Test? Can you raise your legs when lying down?

    @Gingergrrl Perhaps not being able to lift the leg up at all is a different thing from being able to lift it but not for long? Perhaps it's more of a neurological problem? But I'm no doctor so I really don't know. Sorry. In my case it was clearly a mitochondrial problem since the muscles did...
  25. Lindberg

    ME/CFS Test? Can you raise your legs when lying down?

    @RinkyInky @Gingergrrl My doctor said that since the muscle in the thigh is so big it can give you a good hint about the energyproduction/mitochondrial work. The trick is to get the muscle exhausted/strained and then see if it can continue to work or not. He had been working with sport...
  26. Lindberg

    Temporary paralysis I need your Insights

    @Mary I can't take licorice either, my thougth was that it stimulates the adrenals but they are too weak so they are putting on the breaks instead. I can't take anything that stimulates the adrenals, makes me crash. Including worsening of POTS, as you mentioned. Interesting also that you get...
  27. Lindberg

    Temporary paralysis I need your Insights

    @Jenny TipsforME Yes, the cream since that was what I had. I only used it during the worst crashes/days to support the adrenals, didn't dare to use it for any longer period of time. I placed it on the inside of the arms where the skin is thinner and repeated a couple of times per day. Helped...
  28. Lindberg

    Temporary paralysis I need your Insights

    @Jenny TipsforME My diagnosis is ME and my doctor and I both assumes I also have POTS, but I haven't done a proper test for it. I need my glass of water with salt, though... :) My cortisollevel is low but within the threshold for being ok. Everything points to adrenal problems though when I'm...
  29. Lindberg

    Temporary paralysis I need your Insights

    I too get temporary paralysis and I therefore appreciate this thread. For me it's associated with adrenal problems and appear if it has been too long since I ate or after a meal when the blood goes to the stomach. However, a doctor I just met said "we usually call those episodes for...
  30. Lindberg

    ME/CFS Test? Can you raise your legs when lying down?

    My doctor asked me to do a similar thing. After I had raised my leg straight up I was told to hold it there for a while. After I lowered it I was told to do the next one and hold it straight up for a while. Then he asked me to lift the first leg straight up again but this time he was holding it...