Need help in my journey of declining health

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Joined: Fri Dec 01, 2017 5:00 pm

Need help in my journey of declining health

Post by Needlifeback » Fri Dec 01, 2017 5:11 pm

hello all. I’m new to this community and never reached out for help but it seems I don’t get any help from drs and who better to ask then from the community that has probably been in my exact shoes
I have been having severe flare ups over the last two years that were months apart the first year and now every month I have one. I’ve had trigeminal neuralgia twice, burning; tingling legs; now constant pain under ribs that wraps around my back that’s debilitating, vision problems on and off, bee stings on spine at times, odd vibration in right shoulder blade on and off for seconds at a time, memory issues, tripping, running into walls, head tingly, carpal tunnel syndrome, right arm weakness, leg and arm fatigue (tired just putting make up on or going up a few steps) feet are painful like a band of pain on top of foot wrapping to bottom making walking more and more difficult as time passes and extreme fatigue at times. With all that my pcp referred me to a spine dr who ordered a brain mri without contrast and they only found five nonspecific lesions T2 Flair touching the anterior horns of the lateral ventricles and one in the right side subinsular cortex. The mri report suggested a spinal tap if I had inflammation which I have had for two years and the only thing that helps is steroids; which my pcp gives sparingly so when I’m starting to feel good again I’m done with treatment. My neurologist I was referred to after the brain scan seems to be stringing me along. No additional mris, thinks I need to see a rheumatologist which I already have and nothing gained from it. I’m seriously frustrated that additional tests are not being done to find out what’s wrong with me. I am barely holding onto my job and work, home, shower and bed from exhaustion and pain. Not a life. Any suggestions would be greatly appreciated. I’ve seen gastro, rheumatologist, gyno, pcp for all kinds of Lyme and blood work and all good except slightly elevated c reactive protein (5 mg/l) and slightly elevated plt (406x10’3/) which goes up very little every year and low mpv (8.9). Which are so slight they don’t even matter. What tests should I ask for and what would be the significance of the few lesions, if any significance at all. I’m desperate for answers and ideas or suggestions. I need my life back. I was an active speed walker and always called energizer bunny and now this from age 44 to 46

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Re: Need help in my journey of declining health

Post by jimmylegs » Fri Dec 01, 2017 5:20 pm

welcome! answered you on your second/duplicate post here ... ml#p251072

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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