I am at my limit with doc's and specialists not having any idea what to do for me with me. I really need a doctor who can listen to how severe my symptoms are, know what tests may need to be done and how to interpret them.
I know this is asking a lot but I read peoples posts and think wow you had a doctor who did a muscle biopsy, ran a SPECT test, so I know they exist but don't know of any where I live.
what I don't want is someone who is going to tell me to change my diet and take turmeric. I feel like I am dying and I can't take another whew whew doctor and their fluffy ideas that I have already done for 15 years. I am still reeling from a bad appointment yesterday with a new idiot who was demeaning and worthless.
I would really love if i could find someone took my medicare, I know there aren't many but I can hope. but even if they don't if there is someone any where in bay area that you trust, I REALLY APPRECIATE YOUR HELP AND SUGGUSTONS. I have family in southern California so that would work too. thank you tons!!!!!!
I feel for you and your message is sadly all too common. Over nearly 30 years, my parents and myself have paid for almost every test you can have, yet nothing huge shows up in terms of a novel unique disease because there is still no agreement on what constitutes our disease as the focus is incorrectly aimed at 'fatigue' and the tests tend to be negative as they're ruling out other conditions.
For sure, if something does show up having been sick for years or decades with ME CFS this is 'good' as if we look at CDC criteria then we can say to people who insist we're simply depressed, either we've then been misdiagnosed (unlikely) or have acquired another disease or ailment in addition to our original condition (very likely). In my view, the bonus in using research based tests, is to try and shift the diagnosis away from disbelieved CDC CFS to avoid CBT/GET or other pointless psychiatric interventions to try and get into another more appropriate diagnosis in the aim of getting treatment. If we're focusing on this, then tests can be useful - hence I am rather obsessed with them myself.
The main issue is getting permission from doctors to have tests that are invasive because there is very little research out there, and if there is some tucked away somewhere, the results are rarely consistent. For this reason, we find it very hard to find a doctor willing to cut bits out of us (e.g.a muscle biopsy) or inject us with radiation (brain scan) to see what's wrong because they don't want to to make us worse in the process.
This is why, in general, the doctors we meet mostly believe we're lazy, neurotic or depressed because they find little wrong and if a 'CFS Specialist' they meet misdiagnosed CFS patients recovering with snake oil treatments, so presume we are mental as well like their plethora of 'recovered' CFS patients who never had it anyway. Yes it's incredibly unfair and like yourself, doctors still slag me off to my face even though I've a veteran of this disease or should I say, collection of diseases as not one of us rarely knows what we actually have....yet. Hopefully one day.
As ME CFS is a multi systemic disease, we can't just ask doctors to 'test us' and find something wrong unless we're very wealthy. They have to have areas,yoiu the patient tells them were you feel problems are at:
Endocrine (hormones)
Circulation including heart
Brain (neurology)
Immune system inc infections and allergies
Respiratory problems.
Gastroenterology (stomach).
Genitourinary etc.
If you have known problems in any of the above areas, then you'll have to be your own doctor and focus on one area that you feel may show something on testing. We could spend a million dollars and find nothing if we look at the wrong area of the body. Even if CFS affects our whole body, our main issue is metabolism, immune system and how this affects our whole system.
P.S I'm severely affected and had a muscle biopsy for mitochondrial disease. It was very painful, given me nerve damage and a normal result too, so a total waste of time and money. The latest research would imply muscle biopsies are normal because our problem lies in how the cells work at a metabolic level, not because we have acquired an actual muscle disease where the muscle fibre is structurally damaged (mitochondrial diseases).
SPECT scan is useful, I want one myself. However, the findings will be non specific and won't 'prove' you have ME CFS or any disease at all. They'll just maybe show an abnormality. Treating it will be the next problem.
The bottom line is money and how much you have to spend (most of it is wasted on negative testing) to try and get out of CFS in order to get healthcare insurance that is based on a biological problem not a perceived mental health problem. The longer we stay sick, the poorer we are financially. I'm not American so don't have private care insurance.
I guess you're looking at ways to get healthcare based on something that is 'real'? If so and you have congnitive dysfunction, yes do try a: SPECT brain/FDG PET for low brain glucose metabolism, Autonomic Testing inc a TILT test to see if you have POTS/Vasovagal Syncope/, 24hr holter monitor ECG, EEG or better still a QEEG brain map (will be abnormal in CFS), and if you nearly always feel infected and worse with activity with raised glands I'd measure your T Cell Sub Populations, NK, B Cells/Lymphocyte Subsets and your IL-2, IL-4, IL-6, IL-8 Cytokines and If you're constantly getting infections, mostly of the upper respiratory tract I'd also do a IgG Subclass and see if your IgG 3 is low as for that you can have IV IgG therapy on insurance in the states as it's an diagnosable immunodeficiency state.
I could go on and on, but will put everyone to sleep.
