Stephanie’s Treatment at Mayo

Hello! If you are reading this in your email. Click it. It will take you to a page where I have links attatched throughout. So clicking on something will define it. 
I’m not posting a photo of me looking like hell. You don’t need to see that.  

How did this happen to me? My neurologist forgot about this very serious test for 7 months. Without telling me or asking me. He sent this very serious test into the Mayo Clinic. Forgot about it, and never explained it.  “Paraneoplastic Panel”.


Lightning can strike twice. As many people who know me. I’ve been battling systemic RSD for the last 4 years. Since my RSD doctor retired, I’ve been out of options to treat it, and have just held on.
Now I have a new rare diagnosis. The Mayo Clinic believes it’s cancer with a nurological symptoms.
You’re going to say, “How does the Mayo Clinic know that something is cancer through a blood test?”

That’s what I wanted to know, and all of my doctors. These tests aren’t cheap, or covered by private insurance.
What I found out was that they tested nearly 60,000 people with unexplained neurological symptoms with the same panel I tested positive. Only a fraction tested positive. I tested positive on the high side. “An individual patient’s autoantibody profile can predict a specific neoplasm with 90% certainty”. That is the reality of needing a Mayo doctor when all of my small town doctors are hoping for the best. 
I’ve been genetically tested through my fertility doctor and we don’t have a history of cancer in our family at all.

Sometimes cancer shows up in the healthiest people. 
When you’ve done everything right, not smoked, eaten everything organic and nothing processed. I wonder if this is really happening right now?

I’ve seen young people with cancer that looked totally wholesome. I was optimistic that they were getting the best care and it would all work out. 

Here I am, on my journey to Oz. 
 
 This is very urgent. A private policy won’t cover things at Mayo or cancer treatment. I’m almost out of time to get testing and treatment You can click on the links underlined. . Thanks to my careless Nurologist who ordered a $20,000 panel on me that was sent to Mayo. FORGOT about it, when I tested positive for an antibody that is used for “Directing a focused search for cancer.”  Then ordered it AGAIN when he remembered 7 months later. Results were the same. He never told me about this, and what needed to happen. I started having severe symptoms. 

Other policies don’t cover rare diseases and tests that are done only at Mayo Laboratory . I never imagined it would happen to me. March 1st is the day I start treatment at the Mayo Clinic to get rid of this rare disease. 

This funding will literally save my life.

The $4,000 will cover some treatment and travel. From Florida to Minnesota for up to 4  weeks. If they admit me when I’m there. I’ll be in the hospital alone. So if anyone knows someone in Rochester, MN. Who would take the time to visit me in the hospital. Playing card games or something. Being in the hospital is  depressing and feels like punishment. It’s not a spa day. It’s hell.  Luckily in the past I’ve had friends who could come by. In Minnesota I’m not so sure.....

About me: How did I get here? 
I’ve spent my entire life eating clean, challenging myself, pushing my self so hard to be the strongest and fastest I could be. Taking good care of myself and those around me.  I’m not 60. I’m 37. The last 10 years I’ve spent in RSD hell. This can’t be the end. 

I haven’t had it easy. Everyone knows I fight hard.  Even if I wanted to ask someone for help it wouldn’t be my family.  It’m pretty tempted to put all of their phone numbers on here so you can all give them a piece of your mind. My friends who have really been there, met my parents face to face. When I was diagnosed with RSD, I told my Mom, and she didn’t care. I was in so much pain I was vomiting on the the phone with her. She could care less. I’ve learned my lesson to stay away from toxic people. When you get seriously ill, you find out who you’re married to or what kind of people you have in your life. 

How did this fancy doctor at a prestigious hospital screw up so bad and forget about testing me with $20,000 tests?  I met him with a study in hand, and I’d like him to do this Plasma Exchange that is the newest treatment for RSD. I’ve already had so many high dose ketamine infusions that were not done correctly and they are a nightmare. I have a port for God’s sakes. I really can’t believe this has been my life. I wanted to try something else. The first thing he says, “I’m not interested in pain.” I wish I could tell you what I was thinking. I kept it to myself. He decides to test me for all kinds of rare things without telling me, and these labs are sent to Mayo. He forgot about this very serious test fo 7 months. Retested me, and it came back positive again. I left that hospital and doctor without ever being told what it was or what needed to happen. I find a new Nurologist, he’s amazing and has a personality. He actually cares, he says he will find someone to do the Plasma Exchange. He thanked me for the study! “You really opened my eyes about RSD, now I see it in a completely different way. You changed the way I think about it.” Actually he can thank that Neurologist who did the study, because he cares about pain.   He calls me, tells me “I’ve called everyone I know, but there is one more person. I want you to call him. I know he will do it.”
I wait two months to see this Nephrologist, and he’s really amazing too. Birds of a feather...

Like my Neurologist, he doesn’t know how to use a computer that well, but he went on Mayo’s website and looked up the tests that I had. He found the algorithm for the panel I tested positive for having a rare antibody. We tried to get the add on testing done at his office, but he’s not in the position to be financially responsible for these $20K tests I’ve had twice at Mayo. I’m sick of hearing the word Mayo at this point. As if RSD wasn’t enough. Now that I have some freakish antibody that points to cancer and other horrific diseases. 

Everyone who knows me tells me I’m resilient, strong, knowledgeable about a variety of things. You could only imagine my reaction when Mayo Clinic Jacksonville, FL told me, “Our doctors decided that your diagnosis needs to be seen by Mayo Rochester.” I said, “Ma’m, are you telling me that your hospital isn’t as good as the one in Rochester?” No, that’s not what I’m saying, she said. “Really, because that’s what it sounds like to me. Listen, I’m not rich and your asking me to go to Minnesota when we have a Mayo Clinic four hours north of me?” 

I’ve always had this rule; Don’t help those that won’t  help themselves. It takes getting burned a few times to learn that most people don’t want help. They sound like they’re asking for help, but they’re really expecting you to do everything for them.
I’ve never asked anyone for help. I’m the problem solver, go getter, and finish everything I set out to do. My best friend always says to me, “Check, Check, Check!”✔️✔️✔️ I always follow through. No matter how tough it is.

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Stephanie Illinois 
Organizer
Fort Lauderdale, FL
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