The story of Jeanie
I had what I was told was a stroke in 2017. I was given a TPA which given to stroke patients if they get to the hospital soon enough, which I did. After the prerequisite 24 hours the hospital did a MRI but didn’t see the normal evidence of a stroke. Mt next visit to my neurologist he told me that it looked like I had had some bleeding on the brain and he want me to come in for more testing. Lu was I mad. Anyway I called the hospital to voice my displeasure and the next time I saw my neurologist he decided that he was wrong about the bleeding. I guess I was pretty naïve because soon after he left the area. After this I slowly started losing my balance when I’d stand up. Went to an ear, nose & throat dr and was told I had Vertigo. Also during this time I was having a hard time urinating on my own. Turned out that my bladder just quit working. Neo-Genic Bladder. Ok. Well, I kinda got better on the balance but then it slowly got worse over the next few years. I went to several neurologists as we couldn’t keep them in our area and no of them could figure out my balance was off. By this time it’s October of 2022 and I realized I have lost hearing in my left ear it seemed overnight. I got into another Ear, Nose and Throat Dr. he started me on Prednisone, didn’t help. Then 3 different times of steroid shots in my left ear. No help. So, he sent for an MRI w/Contrast, the technician that read my results came back with the diagnosis of Superficial Siderosis. That was in Oct2022. Since then I’ve seen my Dr, a Neurologist in Springfield, MO and a Associate Professor, Neurologist at medical school in Little Rock, AR. No one knew anything about this “condition”. I have contacted the Mayo Clinic and ask if they could help with condition and was told they could not. ??? I looked up doctors that have treated this condition and everyone but Dr. Levy were no longer practicing. I live in NW Arkansas and going to Boston, MA is going to be a hardship as I am on disability and my husband just retired this year.
So, that is my journey so far. I have had some illnesses over the last couple of years that has no explanation that is usually explained as UTI, or the day after Thanksgiving I thought I had severe indigestion or having a heart attack but when I went to the hospital my blood pressure was high and they think my kidneys are failing. I tried tell my dr’s that I have a Central Nervous System condition most times they ignore me because they have never heard of it but I think I was able to convince my primary physician last week. I hope so. I tell people/medical people that I am a zebra. I heard on a medic show where a resident was teaching new drs and told them when they are trying to diagnose patients and they are telling their symptoms. If they hear hoof beats, think horses not Zebras. I tell them I am a Zebra as I have 2 Rare conditions. I also have something called OPLL. I grow calcium on my spinal cord, which is why I have have several neck Syrians is probably why I have had bleeding that has made its way to my brain. Who knows. Just lucky I guess. This last has been frustrating. I’ve quit driving as during the last 6 years I have had several accidents so I’ve lost my independence. That has probably been one of my biggest lose. But through it all I’ve been so lucky because I have the BEST husband. He takes care of me. Oh, I have fallen quite a few times, one especially bad one where I fell backwards out of the tub while taking a shower. So now I only take a shower when he is home. He. Does all the grocery shopping and cooking meals. I try to do the laundry and I pay the bills (thank goodness for auto-pay).
Ok, that’s my story so far. Depression has been my greatest hurdle but my husband is my rock