Patti needs desperately to get to Vanderbilt. She has an unknown disease that is taking her life. Vanderbilt is her last hope. We are raising funds for fees that are not covered by her insurance for certain test that will be needed. She will also have cost of stay and fuel to get there. Patti is on a fixed income. Here is what patti has wrote herself about her unknown disease.
This was my patient prospective I had to write to all the doctors at Vanderbilt: I would love for you to read it when you have a chance please.
I was officially diagnosed with unknown etiology of hypo-magnesium in March 2016. I had a few episodes in years prior to it finally taking over completely, one episode was December 2013 and resulted in a lengthy hospital stay at Memorial Hospital in Chattanooga, TN.
I have continuously received magnesium infusion of 5 grams no less than twice weekly since 03-2016, sometimes daily, but no less than twice a week. I began this journey with a lot of unknowns and still today I know nothing more than I did then except my body is becoming much weaker, my eye sight is getting worse and my tolerance of the infusions are gradually taking its toll on me mentally, physically and financially.
I have been dedicated to a life that no one could figure out, thinking at times I was crazy and probably some people probably still do. How do you explain the unknown to someone while your looking at them like a perfectly health whole person? I ask myself that more times than anyone can imagine. I mean if I don’t understand it how do I convince others of the magnitude of issues I’m living with.
I have had multiple surgeries;
I was given 2400 MG of magnesium oxide daily forever, it ate my esophagus up with ulcers to the point now if I swallowed one I will roll around crying in pain. So the port was the next option, I’m currently on my 6th port which is now a Bard PowerFlow Apheresis IV Port (third one of these) placed by vascular specialist in hopes they would last longer. Last one placed was 12-2021.
I had a stroke 04-2018 due to magnesium dropping causing afib sending a clot while I was simply picking up sticks with my grandchildren in the yard. I was airlifted to Erlanger in Chattanooga, TN I was blessed to receive the TPA along with physical therapy I’m here today to continue my story. In June I began to have the worse weight on my neck I thought I would die from the weight of my head, diagnosed with Intracranial Hypertension and got a VP Brain Shunt 10-2018, best surgery I’ve ever had. The pain was almost unbearable, once again I am blessed.
With the unknown of giving this amount of magnesium you don’t know what it is doing to your insides and the magnitude of heat rises to feel like. 1,000 degrees every time I receive the infusions. My eye sight is deteriorating and the doctors say my optica nerves look like a dry desert land due to the extreme heat inside my body. I developed insulin resistance, chronic palpitations along with PVC’s my heart didn’t know what to do one minute magnesium was 1.6 the next 0.9 and my body struggles to maintain normalcy if there is any way to achieve that.
I began to feel my bones popping and the pain gradually began getting so bad in 2022 I broke my foot and two months later I had a broken back T5 T6, worse pain I’ve ever endured. The doctors only assume the magnesium has probably depleted to some level out of the bones and my neurosurgeon recently told me my back looked like a 77 year old female. That’s what any 53 year female that looks perfectly healthy wants to hear right. While walking out Dr. Seyed, looks me in the eyes and says be careful please don’t fall. I knew what he meant my bones are like glass yet no one knows why.
I don’t have a good memory anymore it seems that the stroke and the brain surgery has caused me to forget a lot but then I have realized over the last few months honestly the heat from the magnesium infusions I believed have started effecting my mind causing some confusion. I’ve asked my neurologist about Alzheimer’s he doesn’t agree.I suffer from neuropathy severely in both feet, arthritis in my hands and joints ache all the time yet I’m blessed to be here today.
I don’t know the end of my story no one does honestly, what I do know is I look healthy like a normal person. To see me you would never know what I’ve endured since 2016 I wish I had keep a journal to tell my story yet I didn’t see it lasting this long, then again the very first doctor I ever saw was Dr. Ann Ward, she looked me straight in the eyes and said this “It doesn’t matter what the name will eve be, it will never change the treatment option” then turned me over to Dr. Mugo after she retired. I was called in for an appointment one day to see Dr. Mugo she said at the level I was receiving magnesium she wasn’t comfortable being the ordering physician and said she would have to discharge me due to the unknown. I think back at that day as I was scared to death that she was signing my death certificate, only after her partner Dr. Ward, said the magnesium infusions wouldn’t change no matter the name of the disease. I’ve been to genetic doctors, endocrinologists, nephrologist (potassium and calcium is perfect), neurologist, gastroenterologist, cardiologist, genesis and probably 20 more I don’t remember, no one has figured out where the magnesium goes or why. I hope this helps a small bit to understand I’m not the faint at heart and I’ve fought hard to be here today, I just hope you may can help me be here longer.
Thank you,
Sincerely,
Patti Martin
