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Old 05-17-2011, 06:46 AM
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darlindeb25 darlindeb25 is offline
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Join Date: Aug 2006
Posts: 744
15 yr Member
darlindeb25 darlindeb25 is offline
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darlindeb25's Avatar
 
Join Date: Aug 2006
Posts: 744
15 yr Member
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Thanks Peter. I do research, all the time. I have been at this for years. I do have other issues and I am dealing with them as best I can. I am gluten intolerant (gluten free for nearly 11 yrs), now totally grain free (all grains contain gluten, not just wheat, rye, and barley), nightshade free, cruciferous veggie free, sugar free, processed foods free. I lost 95# last year and have kept every # off..lost it from March to Oct and have kept the weight stable since Oct. I have small fiber sensory polyneuropathy, seeing a neurologist, who I might add wanted me tested for adrenal insufficiency (mainly because of my low BP). I have my cholesterol down to 158, my pre-diabetic levels are gone, glucose now around 85. I have had so many blood tests it would seem like I have been drained, cat scans, MRI's, recently 22 x-rays for arthritis, a diagnosis of CFS (2 yrs ago), fibromyalgia (March, which I know I have been dealing with for years and years). We have done the process of elimination over the last several years. I have seen an endo, and ENT, a sleep doctor (diagnosed with sleep apnea nearly 3 yrs ago)..I have the best neuro out there, my PCP's are great. Where do I go from here? Exercise and the good diet I eat now...hopefully will work for me. I can't take medications, they all cause flares in my healing leaky gut, another syndrome, I'm guessing is what you are thinking. It's all a Catch 22, we do what we have to do.

I'm not trying to be rude. I have been tested and retested, then tested some more. Brain MRI, cervical MRI, sinus cat scan, abdominal cat scan, abdominal MRI, bone density, EKG's, EMG's (both types for nerve conduction testing), gene testing...it's all been done, sometimes over done.

Even if CFS isn't a real diagnosis to you, I know I am chronically fatigued and no one has figured it out. I take vitamins, B Complex, B12, multi, Vit D..I walk daily.

I'm trying, no one can ever say I haven't gave it all I gots!
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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