In the mail today, I received a letter from the disability office stating all the doctors records and dates of onset of diseases and how it progressed. After the disability department and my attorneys sifted through 3 feet high of medical records, they sent a condensed version with diagnosis and major symptoms by date, as determined by the state disability department and their medical team.
Imagine my SURPRISE when I saw that Mayo Clinic less than six months in to this disease had the following to say about my health.....
Conditions and Diagnosis:
Non-epileptic seizures - autonomic neuropathy - peripheral neuropathy - small fiber neuropathy - multiple sclerosis and cerebral vasculitits.
Seriously. This was PRIOR to me being seen by Dr Goodman the autonomic specialist. I knew there was an internal investigation when I switched to Goodman. He was furious that they knew about autonomic neuropathy and didn't teeter me but I had to be referred by an outside source. So I knew about that.
However, it wasn't until 2015 and my testing from Dr Levine that it was confirmed as small fiber neuropathy. I had never even heard of that disease until then. So from the 2012-2015 I did not know that I had small fiber neuropathy. There was no treatment. They knew. Yet they didn't tell me. And they did nothing to treat me for the condition.
To make matters worse I had NO idea that I was officially diagnosed with MS or Cerebral Vasculitis.
In fact, I start testing for Vasculitis this next month. (Bring on the biopsies: brain-kidney-lung-leg)
I could have been CURED from some of these illnesses IF they would have tried to do treatments. Six months in to a problem is much easier to reverse than five years in. And the extensive damage that has been done in that time completely irreversible.
But it does put the missing pieces in right now.
I have autonomic neuropathy where my brain is sending wrong signals or no signals. My body sends signals for the kidneys to beat and the heart to dump. We knew he "control panel" in my brain was destroyed by a blood clot causing a stroke. But, the seizures were a mystery. Why? Why so many non-epileptic seizures and differing from one another. Well cerebral Vasculitis is the explanation. Combine that with damage from strokes and the reasons are very clear. Damage to the blood vessels. And not enough to blood or oxygen being allowed to the brain. Oxygen and blood get cut off and boom. Seizure time.
Thomas assures me that our path was guided and led by our loving Savior so there may be explanations and events I don't see nor understand. Would I have continued with Mayo a Clinic had they given me all the diagnosis? Would I have done irreversible treatments that could have been detrimental to my health? Was my struggle and the knowledge, empathy, understanding and patience I gained, more valuable than knowing up front? Am I better off for having had to struggle for years and enduring months and surviving the never-ending weeks and excrutiating and tiring days?
My path, the one I walked was the path I needed for my progression and to learn what I needed to. But it doesn't stop the frustration of enduring years of questioning. And years of feeling so isolated and alone like no one understood nor believed me. It doesn't erase the heartache of losing so many cherished friends and loved ones because I couldn't get a diagnosis and they thought I just wanted attention. But I am different from the experience. Better. Less judgemental. More understanding. More empathetic. Closer to my Savior.
On a positive note:
Autonomic neuropathy caused by trauma to the autonomic system. Blood clots from the surgery in July 2011, where my vasovagul nerve was cut and I bled out, caused a massive stroke that took out the control panel of the brain.(autonomic neuropathy) The clotting also damaged the blood vessels. And caused a brain bleed. (Stroke and cerebral vasculitits) My immune system became overwhelmed and shut down further causing issues with these diseases. The small fiber and other neuropathies were damaged by the autonomic and autoimmune systems shutting down.(small fiber and peripheral neuropathy) The seizures began. Initially they thought Multiple sclerosis. However the Sjögren's syndrome makes more sense as it, in later stages, actually causes more organ damage and complications.
With increased damage the Vasculitis can advance to causing all the damage to the cornea of my eyes starting the process of losing vision. It causes the deep headaches and deep eye pain. It causes the jerking and loss of feeling and severe deep pain and itching. It causes a blood pressure difference in extremities which I have and also the severe difference between systolic and diastolic pressures. It causes lung damage and paralysis of the esphogus and entire digestive system. Which is all what I am experiencing. So. It fills in the blanks.
I just wish I would have known and didn't find out on a disability findings form. I guess me and my doctors will begin this new testing to see how far the Vasculitis has spread. But no wonder the seizures are so much more intense. No blood flow to certain areas of the brain and a brain bleed and well..... I am just grateful I am doing as well as I am.
And I guess after all, wherever the source of the Information, knowledge is power. And with more knowledge comes better understanding and a greater clarity of what I need to do to continue to stay here with those I love.
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