Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
Discuss the article on the Forums.

Ms vs cfs vs sarcoidosis vs idiopathic

Discussion in 'General ME/CFS Discussion' started by Suffering, Feb 15, 2017.

  1. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    Im trying to decide between them but can't.

    Can someone help me to decide? I'm not seeking a 100% accurate diagnosis im trying to narrow down the possibilities here while I wait to see the specialists because I just can't sit here and do nothing. I am in pain everyday and I just can't carry on like this much longer.
     
  2. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    Some days I'm convinced it's ms then next I decide it's cfs and sometimes I feel it's sarcoidosis.

    These are all difficult to diagnose illnesses.

    We should not underestimate the ability of the patients gut feeling to figure out what's wrong.

    Doctors are essentially having to guess, alot of the time. I don't think we should downplay our own opinions about what's wrong with us.

    Doctors may dismiss or downplay our symptoms because they can't feel it.
    They don't care if they make the wrong diagnosis. We must be our own advocate
     
    merylg likes this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,895
    Likes:
    10,071
    Perhaps then the diagnosis is not as important as finding some symptomatic relief.
     
    Hutan and barbc56 like this.
  4. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    There is no relief from this. I don't believe it. Neuropathic pain is very poorly treated.

    I want to know what's causing my symptoms so I have some understanding of why i'm being punished
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,211
    Likes:
    31,646
    The decision between these diagnoses is not going to be an issue of symptoms. To diagnose MS or sarcoidosis there need to be hard objective signs on physical examination or specific findings on imaging or other tests. That is because those diagnoses are defined by evidence of specific pathology, not symptoms.
     
    merylg, KME, lauluce and 5 others like this.
  6. Kati

    Kati Patient in training

    Messages:
    5,446
    Likes:
    19,477
    Hi @Suffering, you may need to find a good physician who will be able to sort out the issues for you and with you. In the end, it's what matters, getting the right diagnosis and the right treatment for that.
     
  7. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,154
    Likes:
    21,344
    Albuquerque
    Ms vs cfs vs sarcoidosis vs idiopathic
    No we can't. That is not what we do on this forum. From our rules:
    As Dr. Edwards said:
    This requires a physician.
     
    merylg, AndyPR, Sidereal and 3 others like this.
  8. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    But making guesses is not the same as diagnosing.
    It's the next best thing to it
     
  9. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,154
    Likes:
    21,344
    Albuquerque
    We are talking about serious medical conditions. Guessing (about a diagnosis) is not appropriate.
     
  10. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,140
    Likes:
    3,414
    Vancouver, British Columbia
    Making guesses is insanity. It might not be any of those things.
     
    Joh, Sidereal, Sushi and 1 other person like this.
  11. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    Well what do you suggest then? There's a thing called a waiting list and I don't get to decide how long it is.

    Doctors don't care if my neuropathy becomes permanent or not.

    They can't fix this anyway. That's one thing we can say about all the illnesses in the title
     
    lauluce likes this.
  12. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

    Messages:
    1,478
    Likes:
    7,557
    You are on a CFS/me site not a general health site. It's very difficult for anyone to respond to you on this subject. Perhaps post something more relevant to CFS/ME?
     
    barbc56 and Sushi like this.
  13. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,140
    Likes:
    3,414
    Vancouver, British Columbia
    That's not fair to claim that doctors don't care. Don't blame the doctors for the long waiting lists. That is down to the gov't and how much money they are willing to put into healthcare. Instead of getting angry at us, why not put that anger to good use by lobbying the gov't for more funds.
     
    barbc56, AndyPR and Knockknock like this.
  14. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    Is cfs neuropathy different to idiopathic peripheral neuropathy? How?
     
  15. barbc56

    barbc56 Senior Member

    Messages:
    3,637
    Likes:
    4,976
    Absolutely! It would be like throwing darts on a dart board. Speculation is okay for some situations/questions on a forum. Medical advice can have unintended consequences.
    I know it can be a very frustrating experience. I'm not quite sure what you want us to do.

    We do support you but it wouldn't be appropriate support giving you a diagnosis.

    Do you have a pcp who can possibly provide symptom relief.

    I'm somewhat confused. You're understandably upset about having to wait but then you also say the doctors can't help you. What is your purpose of seeing the new doctor?

    May I ask what kind of doctor you are trying to see?

    Unfortunately, other than symptomatic help there is not much more that can be done. However on the brighter side there's a lot of new research out there that may prove to be effective,

    Take care and good luck. Keep us posted.
     
    AndyPR likes this.
  16. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    it's not a question of appropriateness. Nobody here is skilled enough to do it.

    But that's irrelevant because I'm not seeking a diagnosis.

    If you want some chance of a diagnosis it involves money, time and plenty of horrific tests eg spinal taps, biopsies, endoscopies etc. And when it comes to diseases like sarcoidosis or ms or cfs, it's often hard to diagnose so the diagnosis is potentially wrong.

    No harm in making hypotheses.
     
  17. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    symptomatic help when you don't know what's wrong with you is also like throwing darts. It's even more dangerous than speculation.
     
  18. Knockknock

    Knockknock

    Messages:
    212
    Likes:
    124
    Jaja i like that!!
    The best i heard in this thread.
    That is what we all should do, use our energy to push our Gov for more funding, there is great doctors and researchers out there that really know what is going on with us, with real knowledge, they can crack this down, find the real cause of ME/CFS, a real treatment, they have guessed the best they can to help us, but if the governments put less obgections and really fund for research and stop playing the i dont know game, we will finally have efective treatment.
    All of the millions missing sufering for many years and the ones, not here any more ,we all deserve the truth and a real effective treatment from the root cause not just symptoms.
    we have had to settle for all this years, treat symtomes, the lucky ones, others havent even had that luck.

    "Suffering" just have your doctor to check for active infections, viruses, intracelullar bacteria, mycoplasmas, candida from leaky gut, most of the times this are the causes.
    With antivirals supplements, diet change or the right antibiotics many people get better.
     
    barbc56 likes this.
  19. Suffering

    Suffering

    Messages:
    81
    Likes:
    10
    Mods, It is not appropriate, on these forums, to diagnose another member's medical condition or to urge other members into particular actions (or inactions) regarding their medical treatments.
     
  20. AndyPR

    AndyPR RIP PR :'(

    Wow, that's a hell of an attitude you have there. Perhaps change that and then you may get responses to your posts that are more to your liking.
     

See more popular forum discussions.

Share This Page