- CASE FILE
Neuromuscular/Autoimmune/Connective Tissue Disorders. Over 15 diagnosed conditions. Regular temporary paralysis/weakness/spasms/neuropathy.
ABOUT THIS CASE FILE
Most notable of inexplicable symptoms are paradoxical reaction to nearly all medications (everything does the opposite), and increasing intolerance to foods and drinks. Most distressing of symptoms is orthostatic intolerance (inability to stay in upright position for extended times), random paralysis and sudden onset weakness (as if my blood was drained and replaced with lead). Over 10 diagnosed conditions by over 20 different doctors, in over 5 years. Multiple blood/imaging and other scans all relatively normal. VNG for vestibular balance disorder positive proof, consistently inconsistent White blood cell count, randomly severely low levels of vitamin D, and indications of Epstein Barr Virus as well as a rarely but occasionally slightly off thyroid count the only "proof on paper". Severe Weakness, Severe Chronic Nerve pain, Spasms, Tremors, Balance disorders, Vision problems, cognitive issues, paradoxical medicine reactions, increasing food and drink intolerances, cognitive issues, mood imbalances, uncontrolled body movements (dislocations), chronic reflux/stomach/bowel/abdominal issues, sweats/chills/low grade fevers, lyphatic swelling and occasional random dermatologic issues are all daily issues among other things. Hypersensitivity to lights, sounds, smells, movement, heat/temperature shifts, and other stimuli is extremely difficult to navigate. Most ER visits have resulted in an inconclusive "complicated migraine" diagnosis even when experiencing temporary paralysis. ALL attempts at physical or balance therapies have resulted in a severe worsening of conditions. I am able to take virtually no medications to assist. Anti-seizure medicines helped the most for the longest but caused severe side effects. My body may accept the medication for as much as two weeks before reacting in the paradoxical, or extremely rare side effect manner, but ultimately always ends in an inability to take long term. I did experience similar, yet not as severe or varied symptoms for nearly 2 1/2 years with a 7-8 year "remission" period between, this time seemingly much more severe and many more widely spread symptoms. I haven't given up on the idea that I will ever be "well" again, but it is no longer my primary goal. I began mostly bed bound, and have "graduated to" primarily housebound with help, but now, I would give the whole world to be able to cook a meal, bake cookies, go to a concert or gathering of any kind, have a full and intelligent conversation with more than one person in a month, anything at all to have a life beyond that of my home. Anything at all that wouldn't cause me to have to take as much as a month to recover from one activity. Everyone is out of ideas. The doctors I have had long term have either graduated and moved on from residencies or are going into retirement, or have switched focuses all around. The couple I still have are AMAZING and would do anything they could, but do not have more ideas. The best doctors I've had, have all been lost to uncontrolled circumstances. Starting over, going through the hell of being put through the ringers of "depression/anxiety/etc" treatments is no longer something I am willing to put myself through. My answer to that is simple. Am I depressed or anxious? HELL YES. Who in the name of all that is holy wouldn't be? I was working the best jobs in the world, going to a school for a degree I loved, very active, and extremely goal oriented. That's all gone. I have one goal now. If not to be well, to be functional. I am depressed and anxious BECAUSE of my circumstances, but they are NOT the cause. I'm here, on this site, to beg the universe to help me FIND the cause. <3