Tarlov Cysts Disease Patient, Stacey, Gives an Update

Read Stacey’s Original Story Here.

Hello to those who suffer from this horrible, debilitating and painful disease. My update since I posted last (which, forgive me, has been a while): I just barely received PCN Medicaid, which is the lowest Utah state medical insurance. It won’t cover the surgery I need. It will, however, help with the cost of medication.

I didn’t get approved for SSDI. The Judge stated that he denied me because my symptoms are not the same. Well, of course I am worse. I wrote letters to all three Utah Senators, and one of them is helping me since they are all upset at the judge for not taking my case seriously even with two doctors backing me with proof of my condition and its limitations. The Senator is trying to expedite my case at the appeals office.

I’m losing feeling in both thighs; I have worsening spinal leaks, and fluid is running out of my nose. My muscle twitches are getting worse, where they jolt me out of bed. Dr. Frank Feigenbaum’s office called about a month ago out of the blue; they wanted me to know that they are still thinking about me and they wanted me to update them on my condition and situation.

I’m trying so hard I try to look at the positives; however, they are getting slim. I feel like they put me in the do not keep her alive pile; so as I continue to pray, I ask for everyone to pray for me also. Thanks for thinking about me. This is hard for me to write, as I am dizzy with muscle weakness. I mostly lay down on a heating pad on low heat since it can be 80 degrees outside and I still feel cold due to nerve damage.

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