Getting a CFS/ME Diagnosis: Where do I go from here?

Discussion in 'Testing and Diagnosis' started by Margaret Ledward, Apr 30, 2018.

  1. Margaret Ledward

    Margaret Ledward New Member

    First of all - my apologies for this being so long. Also, I've am a novice at at forums.

    Secondly, I have joined this forum in order to help my daughter. And have had her read this forum entry and that she is ok with my posting it.

    Although not paralyzed by her fatigue, right now all she is able to do is get up in the morning and take her 5yr old to preschool, then go home and back to bed to sleep until she has to get him from pre-school, stays up with him until he goes to sleep that night (ideally 8-9pm) then she goes to bed as well. And that's pretty much what she is able to do every day now for about a year.

    My daughter has asked me to help her figure out what next step(s) she should take to address her fatigue because she doesn't have the strength or time to do so herself right now. I am grateful that she has entrusted me and as a mother would do anything and everything I can to help her have quality of life.

    She has been struggling with health issues for twenty years now that began when she was 18 years old and fainted at home (splitting open her chin requiring stitches). PCP at the time attributed it to anemia. Since then she has had many tests but diagnoses seem mostly to be co-morbid, not CFS/ME. At the end of this post are her current symptoms & diagnoses, including those which are being treated.

    I have been researching everything I can find on the web for the last 10 days now and have a deeper understanding of those suffering CFS/ME. I can relate to those who are overwhelmed and confused as to what, when and how to go about doing something about this debilitating disease! My questions are:

    NOTE: We live on the Hawaii island and although Dr. Teitelbaum now has his practice here in Kona, we have decided to not go that route since my daughter has already been working with a naturopathic practitioner along with her PCP.

    Should she continue to work with her PCP by asking her to conduct more tests?

    Should she share CFS/ME diagnosis criteria with her PCP? And if so, which criteria? International Consensus, Canadian Consensus, IOM recommended criteria, NIH or CDC criteria?

    Would it be advantageous for her to pay for a Holfort Medical Group doctor phone consultation? Has anyone else done this?

    If her best option is to travel to the continental U.S. to see a doctor listed on CFS/ME lists? (believe me, its just as expensive for us to fly there as it is for those flying here).

    If so, how does one determine which doctor listed to see? One that specializes in CFS/ME neurology, immunity, viral/bacteria, hormones?

    Any help provided is immensely appreciated.

    SYMPTOMS:

    Note: has had the Lupus panel done through the Rheumatologist and it was all negative

    Digestive
    • Frequent bloating
    • Chronic constipation
    • Food sensitivities
    • Iron deficiency (despite supplementation)
    • Vitamin D deficiency
    • Prior ulcer (healed)
    Reproductive
    • Prolapse
    • Ovarian cyst (right side)
    • Heavy periods
    • Worsened PMS symptoms
    • No detectable estrogen during period, normal otherwise
    Head, Ear, Nose, Throat
    • Mild sleep apnea
    • Frequent if not constant mild sore throat (worse when tired or exhausted)
    • Tinnitus (constant)
    • Frequent headaches
    Psychological
    • Depression - being treated with Sertraline Hyclate (Zoloft) 1x per day 150mg
    • Anxiety
    • Panic attacks and/or hot flashes
    • OCD
    • Difficulty concentrating/focusing
    • Poor memory, retaining information
    • White coat hypertension (normal to low blood pressure when measured at home)
    Skin
    • Granuloma Annulare
    • Dry skin
    Allergies
    • Dust mite, pollen, and grass allergy
    • Adhesive allergy
    • Shrimp allergy (blood test)
    Joints, bones etc,
    • Carpal tunnel (both wrists)
    • Tendonitis (both wrists and thumbs)
    • Frequent back pain
    • TMJ and/or jaw pain
    • Crooked spine
    Cardiovascular
    • PVCs (Premature Ventricular Contractions)
    Autoimmune
    • Hashimotos (positive Thyroid Peroxidase antibody (63) - being treated with Levothyroxine 1x per day alternating 75mcg with 112mcg
    • Positive ANA titer (40) Rheumatologist said it could be from the Hashimotos
    • Positive SSB (LA) antibodies (6.3)
    • Adrenal fatigue
    Misc.
    • Irritability
    • Body aches (almost flu-like or hangover-like)
    • Very low energy
    • Constant exhaustion
    • Always tired, especially after activity or high stress
    • Muscles feel weak after strenuous exercise
    • Easily out of breath
    • Intermittent RLS (restless leg syndrome)
    • Difficulty waking in morning regardless of amount of sleep
    • Unrefreshing sleep
    • Dizziness upon standing (orthostatic hypotension/intolerance)
    • Icy hot/burning sensation in my arms and legs (upper thighs and forearms mostly, all at the same time). It usually happens everyday, but not necessarily constant.
     
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