About Me

  • Gender Female
  • Age 57
  • Relationship Married

My Story 2 Appreciate this

My doctors have thrown out those two letters, MS, now and then over the past twenty years, and when they decided that I was dealing with something else I was always grateful. "At least it's not MS! " Crippling, paralyzing disease. I didn't know that it is also a tingling, numbing, irritating disease that affects how you think almost as much as how you walk. I'm currently diagnosed with: Psoriatic Arthritis (2006), Fibromyalgia (1994), Sjogren's Syndrome (2008), positive for past Epstein-Barr virus (1994), Spinal Stenosis (2011), and sleep apnea since childhood. I would have been devastated by these symptoms in my twenties when I was rearing four young children, but now the hardest part is navigating my way through the conflicting treatment plans proposed by my rheumatologist, pain doctor, and my own common sense. I had seven clear attacks in the last year, with the most recent two attacks occurring in the same week. The new aspect is the fact that after the attack of 2/10/15, the symptoms have been raging continuously. Tingling, especially the right leg, radiating everywhere (like those creepy magic finger beds in cheap motels), numbness in one half of my face, scattered random patches, and the soles of my feet, nausea when I wake up, sleeping only a couple of hours at a time, dizziness, vertigo, migraine-type headaches, severe bouts of chills where my teeth are slamming together and my arms and legs are in spasms. Add to this, anxiety so severe that impending doom is overwhelming. My brand new eyeglasses suddenly don't correct the blurriness, and I get a sharp pain in my right eye if I forget to move it slowly. I can't get a deep breath right now because there seems to be a corset strapped to my ribcage. I've lost over 25 pounds this last year without trying. My Irritable Bowel is different from my lifetime battle with constipation and cramping. Lately I don't feel much of anything going on, like a switch was thrown. Looking back, it's not surprising that I have these MS symptoms. I grew up in Cleveland Ohio, I am mostly northern European, female, with a history of childhood asthma, hives, chronic ear infections (and many many courses of antibiotics). I already have several diagnosed autoimmune diseases, and injected Humira every week for five plus years. I'm not sure yet how aggressive I want to be medically. I am already fighting back with common sense: eating well with lots of fresh stuff and very little gluten, getting outside, taking vitamin D (I've been deficient for several years), B12, glucosamine, etc. **UPDATE 9/27/18** My move from the Dallas area to the Ozarks in late 2015 has been a very good one. I live with two incredibly supportive people (my husband of 15 years and my daughter) and have amazing views from the happy lodge style log home we share. I am back to flora and fauna familiar to me from childhood, and I began dyeing, spinning and weaving now that I have the space and inspiration. It's also fantastic physical and occupational therapy. However, I'm basically homebound due to constant MS issues. My legs are stiff and very painful, I never sleep well, and my vision is blurry more than it isn't. I've been going with palliative care and exercise, but the pain management situation here in the USA is a crisis. Because of the Trigeminal neuralgia and spinal stenosis I at least haven't been cut off from pain management entirely, but without the fentanyl patch the pain is sharp, hot and electrical. I'm looking into CBD oil (pain doctor actually recommended this) for when I have zero access to effective pain meds. I did improve for a while, activity-wise, but that was before the "war on drugs" (aka the war on the low-hanging fruit who follow the rules and go through pain management, rather than the war on heroin...)

Interests

Living Well with MS Healthy living, Mobility and accessibility
Getting Involved Advocacy, Volunteering
Research Research news
Hobbies and other interestsknitting, needlework, sewing, other arts spinning weaving felting

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