What should I do????

Discussion in 'Fibromyalgia Main Forum' started by catherinemarie, Oct 13, 2006.

  1. catherinemarie

    catherinemarie New Member

    I was diagnosed with CFS and Neuro-Cardiogenic Syncope about six years ago. At that time I was hospitalized because of the seriousness of my symptoms. I was tested for EVERYTHING....including but not limited to: Lupus, MS, Thyroid problems, etc. I was living in PA at that time, my doctors put me on medications to treat all of my symptoms and I also began receiving SSDI. The medications help somewhat, and sometimes not at all....my symptoms are moderate to severe most of the time.

    As if having these conditions is not enough....I recently moved to Florida....I thought I would find a doctor or doctors (as I did in PA) that would continue to treat my condition with the same or similar medications as I have been doing for over six years. Having a condition known as "chronic-fatigue syndrome" has never been easy....most people think it is just an excuse to be lazy. I have dealt with all the stereo-types....even within my own family.....but I always thought my doctors had a basic understanding of my condition. I have been in Florida for almost a year now, and I have not been able to find one doctor that accepts CFS as a "real" diagnosis. They even come right out and tell me so.

    Recently I thought I found a doctor that could help me, and he encouraged me to also make appointments with a Neurologist and a Cardiologist....(this made sense to me because in PA I did have a Neurologist and Cardiologist that worked closely with my primary doctor). I made an appointment with the Cardiologist who primarily was concernd (obviously) about my serious blood pressure issues, he agrees to continue the blood pressure medications I have been on, and wants to get some tests just to use as comparison for the furture. He did not question my diagnosis (a positive tilt-table test), and really did not address the CFS. However, my appointment with the Neurologist was the total opposite. I admitted to this doctor that I have noticed an increase in my problem with cognitive/memory problems, and that I thought it was do to the CFS (I thought as a specialist he might know of a medication/treatment that could help this). He then told me he wanted to get several tests done; blood work, EEG, MRI, and Neuropsychology testing. He then told me that CFS does not exist and is not a diagnosis, and there must be something else causing my symptoms (ie: Lupus, MS, RI). He then asked me....WAS I ABUSED AS A CHILD?! Shocked by the question, I said NO. That was when if finally hit me.....If these test come back negative (which they probably will, since I already had them all and they were all negative) then this doctor is going to conclude that my symptoms are due to a psycological problem. I, like many with chronic illness, do take anti-depressant medication....I just turned 40, I am a single mother of two and I have been sick for over six years....I would think if I wasn't depressed or anxious at times that that would by highly unusual. I don't however believe that there is any chance that my syptoms are due to anxiety or depression.

    Anyway, I have had the EEG and blood work, but this whole thing about an all day appointment for testing by a Neuropsycologist is really bothering me. They say it is just to evaluate my level of cognitive disfunction. And I still need to have an MRI. My question is....Should I have these tests??? Should I be hoping they find a "diagnosable" condition, just so they don't think I am crazy??? I just feel totally lost and confused....I would really like to know what I should do. Additionally, if they say CFS does not exist....how can my SSDI be justified??? At least now I have insurance....if I lose SSDI, I won't even be able to get any treatment at all.

    Does anyone have any advise for me???

    Thank you.
  2. Susan07

    Susan07 New Member

    The last time my insurance changed I got out my trusty book of providers and called each neurologist, rheumatologist and internist office to see who had patients with FM.

    I was surprised at some of the responses I received, some said very quickly No!

    I have now found a great internist and neurologist (the rheumatologist was a wash-out - old crazy man).

    Hope you find who you need, not sure how I feel about going through all the testing when you've had them already. It sounds like your doctor may not agree with your previous diagnosis.

    Take care,
    Susan07
  3. AllWXRider

    AllWXRider New Member

    I was on every anti-depressant you can name, very little help. The neurologist said that I had MS but the MRI scans showed nothing. The cardiologist couldn't find anything wrong either, but I had wierd flutters around my heart. Tinnitis (ringing in the ear). Fatigue that worsen each month. I was also getting real cold. 100°F Texas heat felt good but my thyroid tests were all normal.

    I went to a D.O. and was tested for Chronic Fatigue viruses: Epstein Barr & Cytomegalo. The numbers from the lab were off the scale! I was put on transfer factors and got bad flu symptoms from a "herxhiemer" reaction..this means that its working.

    Another test to consider is mercury toxicity. Hair sample testing should read zero, the numbers vary from lab to lab, so don't concentrate on the numbers. If your hair shows mercury, then this will weaken the immune system. DMSA is one of the best "chelators" for mercury.
  4. alaska3355

    alaska3355 New Member

    How much is a full dose of CoQ 10?
  5. alaska3355

    alaska3355 New Member