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XMRV Positive? What are your symptoms/medical history?

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
     
  2. _Kim_

    _Kim_ Guest

    New question - #27

    I became ill after:

    • anaphylaxis
    • bacterial illness
    • blood transfusion
    • car accident
    • emotional stressors
    • puberty
    • surgery
    • viral illness
    • Other Onset Triggers:
     
  3. _Kim_

    _Kim_ Guest

    Added a few new categories to question #10

    CURRENTLY, my pain includes:
    (0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)

    • Allodynia (pain due to a stimulus which does not normally provoke pain)
    • Arthralgia (joint pain without joint swelling)
    • Arthritis
    • Bladder pain
    • Costochondritis
    • Dysesthesias (spontaneous or evoked burning pain, but pain may also be deep and aching)
    • General flu-like achiness
    • Headaches
    • Hip or pelvic pain
    • Hyperpathia (particularly unpleasant, exaggerated pain response)
    • Low back pain
    • Lymph node tenderness (cervical,axillary, or inguinal)
    • Migraines
    • Migratory pain
    • Painful menstruation
    • Painful urination
    • Paraesthesia (tingling, prickling, pins and needles, electrical-type buzzing, burning, skin crawling, itching, partial numbness)
    • Right flank pain (liver, gallbladder)
    • Sore throat
    • TMJ pain (Temporo-mandibular joint pain)
    • Trigeminal neuralgia (facial pain)
    • Upper back,shoulder or neck pain
    • Other pain
     
  4. _Kim_

    _Kim_ Guest

    Added it to the misc. question:

    CURRENTLY, I experience:
    (0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)


    Crimson crescents (red/purple marks, adjacent to the back molars)

    Daytime urinary frequency
    Eyes: Blurry vision
    Eyes: Droopy eyelids
    Eyes: Dry and itchyEyes: Watery
    Fatigue that is incapacitating and unrelieved by sleep
    Fluctuations in energy throughout the day
    Hives
    Inability to exercise aerobically
    Inability to exercise anaerobically (eg. weight lifting)
    Skin rashes
    Uncoordinated eating (bite my cheek, my lip, or bash my teeth together)
    Urgency to lie down especially when standing still
    Wasting
    Weakness
    Weight gain
    Weight loss
    Worsening of symptoms after an additional/transient infection (cold, flu, or other)
    Worsening of symptoms under increased stress (physical or emotional)
     
  5. _Kim_

    _Kim_ Guest

    Raynaud's is in there.

    I added this:

    I have been diagnosed with:

    Amenorrhea (abnormal suppression or absence of menstruation)
    Autism
    CFIDS (chronic fatigue and immune dysfunction syndrome)
    CFS (Chronic Fatigue Syndrome)
    Cancer
    Candidiasis
    Celiac disease
    Dementia
    Diabetes
    Ehler's Danlos Syndrome
    Endometriosis
    FMS (Fibromyalgia Syndrome)
    Hashimotos thyroiditis
    Heart disease
    Hypoglycemia Interstitial cystitis
    Lyme disease
    ME (Myalgic Encephalomyelitis)
    MS (Multiple Sclerosis)
    Multiple chemical sensitivity
    Orthostatic intolerance/POTS/NMH
    Post-viral Fatigue Syndrome
    Primary immune deficiency disease
    Raynaud's phenomenon
    Recurring fungal infections (eg. Athlete's foot)
    Restless leg syndrome
    Rheumatoid arthritis
    Other diagnoses
     
  6. _Kim_

    _Kim_ Guest

    marie, thanks for that link. I've included the entire 3-part Ability Scale from hfme.org as pages 5, 6, and 7 of the survey
     
  7. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    What about in addition to "I have been diagnosed with . . ." you add "I am self-diagnosed with . . ." or "I think I also have . . ." My thinking is that many have not been able to get to expert ME/CFS doctors and yet are very aware of symptoms and what they would probably be diagnosed with. This might give a more thorough picture, though less "accurate."

    Also, I like the idea of having the XMRV positives AND the negatives and unknowns all take the survey. That way we can see how the groups compare.
     
  8. leaves

    leaves Senior Member

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    Yeah I like the idea of including self diagnosis. Also, For me celiac has been ruled out but blood test do indicate intolerance, maybe good to point out that only celiac is meant. A while back the no sweating was suggested, I have that too although before I had excessive sweating, so that changed over time.
    *checking my finger prints....*. Yep still there :)
    I guess I have to postpone my criminal career a bit :)
     
  9. _Kim_

    _Kim_ Guest

    As I was updating the survey, I got a big AHA. This survey is for anyone who tested positive. That would include those who are asymptomatic (4% of the healthy controls, family members that were tested, etc).

    All of the wording in the survey assumes that the survey taker is sick. They may not be.
     
  10. leaves

    leaves Senior Member

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    Yeah that's right!!!
    We want them to take it too I guess but it would be good to be able to differientate the results wrt cfs and non cfs people. Maybe add a question like, I have had or have cfs like symptoms. Then we could see whether mean responses vary for these different populations.
    It would also be cool to compare the results with a healthy group that does not have xmrv in the family ( I.e likely to test negative) then we can see how common these symptoms are in the general healthy population.
     
  11. Advocate

    Advocate Senior Member

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    U.S.A.
    In "CURRENTLY, I experience:", someone asked to have this sentence broken into two:

    Fatigue that is incapacitating
    Fatigue that is unrelieved by sleep
    Fatigue that is made worse by exercise or over-exertion
     
  12. Lily

    Lily *Believe*

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    I think it will be interesting to see the testing that has been done (or not):Retro wink: in those who have been diagnosed by a doctor. There may also be a significant amount who have had a lot of testing (other than the basic), but still do not have a diagnosis. I think I'd be willing to bet (if enough people take the survey) we will see many who have been diagnosed without much, if any, of testing that has been done with those who have been treated/evaluated by the handful of known CFS specialists.

    Whether or not you limit the survey to those who have a CFS diagnosis from a "doctor" :Retro tongue:, it would be good to ask the specialty and type of doc (MD, DO, ND), who made the diagnosis. What about also listing the known CFS docs so that we can see how many have seen one of the big CFS specialists? I'm just thinking off the top of my head now.......I know there has to be an end to the questions sometime......:D

    Incidentially, I tried taking the survey twice now. The first time I got tired really fast and realized I should have tried it earlier in the day. I think I finished it, but just sort of marked things willynilly to get done. The second time I started when I felt less tired and went more slowly - I had a very difficult time staying on the right line....I'd find I was checking the answer on the question below the line I was actually on and constantly have to go back and redo. The back and forth eye movements from the question/symptom to clicking the appropriate level of severity made me nauseous quickly and I didn't finish it.

    That of course is no fault of the survey. It's great and I love it. I'm just pointing out how the disease is effecting my ability to do it. I know that when you go live with it, you're hoping that participants will be able to complete it in stages if necessary. I'm not worried about whether I can do it, because it doesn't matter, but I am kind of interested in knowing how many could do it in one sitting, or how difficult it was. (I know - is there NO END to what I think would be interesting information????? :D)

    Most important is the analysis and comparison of the results in the positives vs negatives, but I'm also interested in the remainder too. I would have loved to have been able to help, especially in the analyses and reporting. Just another part of the old me that I miss. You all have done such a wonderful job with this. I think there are several different types of documents that could come from this.

    YOU GUYS AND GALS REALLY ROCK!!!:victory:;)
     
  13. _Kim_

    _Kim_ Guest

    I reorganized the survey to put the demographic questions on page 1 and 2. If someone taking the survey is healthy, they can just bypass pages 3-5 by clicking [Next Page].

    Latest version of the Survey (under construction :Retro wink:)

    I added in the Fatigue suggestions:

    15. CURRENTLY, I experience:
    (0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)


    Crimson crescents (red/purple marks, adjacent to the back molars)
    Daytime urinary frequency
    Eyes: Blurry vision
    Eyes: Droopy eyelids
    Eyes: Dry and itchy
    Eyes: Watery
    Fatigue that is incapacitating
    Fatigue that is made worse by exercise or over-exertion
    Fatigue that is unrelieved by sleepFluctuations in energy throughout the day

    Hives
    Inability to exercise aerobically
    Inability to exercise anaerobically (eg. weight lifting)
    Skin rashes
    Uncoordinated eating (bite my cheek, my lip, or bash my teeth together)
    Urgency to lie down especially when standing still
    Wasting
    Weakness
    Weight gain
    Weight loss
    Worsening of symptoms after an additional/transient infection (cold, flu, or other)
    Worsening of symptoms under increased stress (physical or emotional)
     
  14. leaves

    leaves Senior Member

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    I was also thinking; what about the false negatives?
    I guess we will keep this questionaire up for a long time, so if false negatives get retested later, can they then go back to the questionaire and change their answer to xmrv+?
     
  15. _Kim_

    _Kim_ Guest

    ETA: I am only up to page 20 on this thread in regard to incorporating your suggestions. Hang in there.
     
  16. _Kim_

    _Kim_ Guest

    I'm leaving out educational attainment for now. The US and European equivalents are too messy for me to write that out. If anyone else wants to formulate this as a question, go for it.

    I added the age of onset.

    How does this work as a new question?

    1.
    Have these aspects of your illness changed over time?

    Choose:
    [Have remained constant] [Are somewhat worse] [Are severely worse] [Are somewhat improved] [Have completely resolved]

    • Cognitive symptoms
    • Autonomic Nervous System symptoms
    • Gastrointestinal symptoms
    • Sleep problems
    • Pain
    • Allergies, intolerances and/or sensitivities
    • Sensory hypersensitivities
    • Cardiac symptoms
    • Sexual dysfunction

    Maybe there should be a first question, that really isn't a question, but a welcome paragraph and a how-to-take-the-survey message.

    This is where we could let them know that they can take their time - do a portion of the survey, then come back later to finish it.

    And where we could describe what terms like 'Current' and 'Past' mean.

    Right now, I have the survey enabled so that you can tick both current and past boxes. I don't intend to keep it that way for the LIVE version. It would be too easy, then, for people to make a mistake and entering 2 or more values unintentionally for the same question. For that reason, I will make all of those types of questions so that only one answer per row is accepted.

    RA and hyperreflexia were added.

    Hypertension was added to the cardiac symptoms.

    Added non-related household members (lodgers, au pairs) to the columns

    I didn't include a pet question. Does anyone else feel strongly that this should be included?

    Added Post-polio syndrome to the 'Other diagnoses' question.
     
  17. _Kim_

    _Kim_ Guest

    I need some help with this one. I just stuck a temporary question #1 up there. I need help writing a Welcome paragraph. Something about testing XMRV positive, etc.

    1.
    Welcome paragraph

    How to Take the Survey (in parts)
    Current and Past defined

    Invitation to join Phoenix Rising forums.


    They will check off: I agree to participate blah blah blah.
     
  18. fds66

    fds66 Senior Member

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    I am doing the test survey and I still have a problem with the question about remission. The only time that my symptoms have lifted at all were during pregnancy and never at any other time. That doesn't seem the same to me as a remission for other reasons. Or maybe there are lots of reasons for remissions (would love to know what they are because I'd love a remission). Also after all the discussion on hormones and progesterone on another thread are there any questions about hormonal issues that could be asked? There seems to be a divide between people helped and made worse by progesterone - whether that is pregnancy, the pill or other forms of progesterone.
     
  19. fds66

    fds66 Senior Member

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    Also, the list of symptoms is so long I lose the heading so I lose track of what each column means. Not sure there's anything you can do about that - might just be me easily confused.

    What does auditory processing dysfunction mean?
     
  20. _Kim_

    _Kim_ Guest

    Question #2 now is:

    2.
    I am completing this survey:

    For myself
    For a child under the age of 18

    For someone who needs assistance
     

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