My Cold Dead Hands …

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    That’s the joke my kids and I often make about my dead fingers … corpse claws … the list goes on and on … something had to be done to lighten the mood when the symptoms first onset … I have been experiencing recognizable discoloration since January 2014 around the same time my other “weird / vague / scattered” almost hypochondriac labeling symptoms started. I was initially referred to multiple specialist cardiovascular, rheumatology, neurological, and endocrinologist… they discovered I had empty sella syndrome that had over time resulted in many secondary conditions… thyroid – I fluxed between hyper and hypo depending on what was spewing … had thyroid nodules, my body doesn’t convert T4 to T3 effectively so it’s a roulette wheel of what’s my symptoms this week. I battle cortisol levels that are right at low normal and have had a stim test that was borderline to low normal and we decided to watch it hoping that if we get the thyroid regulated the adrenal will fall in line. I’ve learned to deal with it with humor. I had all testing at the RA for Lupus and associated autoimmune disorders and tested negative for all of those. I was having some weird neurological happenedings and as an incidental finding of the MRI to look at the pituitary, I was found to have periventricular white matter disease in my brain as well as “more than 3 desymintating lesions – bright spots” and evidence of Mylen destruction. All mild and somewhat inconclusive to condition because there was no prior MRI to compare to. The decision was made to follow up in 6 months with another MRI to rule out MS since there are other conditions such as hypertension, head trauma, migraines that cause the bright spots. Some of the weird symptoms I was having was said to be silent migraines – that means aura no pain – which is ridiculous to me – And I had a severe head trauma at 21 in a drunk driving accident where I was hit head on by a drunk driver and knocked unconscious and suffered a fractured skull. I’m now 46 so I wasn’t too concerned about the spots – I followed up once at the 6 month mark and the MRI was the same with no new lesions or bright spots that you see in MS. My neurologist moved and I diagnosed myself as okay and went on about my life. Fast forward 1 year … raynauds develops … I took a picture and showed my doctor – they diagnosed it as incidental and told me to basically deal with it – it’s an aggravation nothing more. So now fast forward 2 more years with thyroid under control, adrenal staying at low normal still, I develop pelvic floor prolapse and while in the gyno doctors office I asked if the hysterectomy would alleviate the marked left side numbness that had begun since I noticed the prolapse worsen? Gyno says no – I’m referring you to a neurologist. This is without no prior knowledge of any of the other medical history – after all I’m seeing him for my downstairs the rest of the multiple weird sysmptoms just make me sound crazy to a doctor or person who doesn’t understand. On my way home I of course start my own self diagnosing… Dr. google at your service, every link that I can see referring to left side numbness – Ana I mean it’s head to toe – very marked to my left side – half of my lips ect is correlating with MS – does anyone else have MS that has raynauds?

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