#1 ·
I’m at my wit's end here and honestly don't know what else to do, so I'm turning to you guys. Maybe someone here can actually give me some decent advice...
Back in late April 2010, I started feeling this tightness in my right shoulder blade. I didn't think much of it at the time, just figured I'd pulled a muscle or something and it would pass. But by May 7th, that right shoulder blade was swollen—literally twice the size of the left one. It was a Friday, and I was planning on hitting up the doctor on Monday, but then Saturday hits and my arm starts tingling. Then my leg. Then my face. Before I knew it, the entire right side of my body just went completely numb. They rushed me to a hospital in Miami where I spent the whole day being poked and prodded. They ran everything under the sun—standard stuff, vascular ultrasounds, heart scans, brain CTs, and an aortic CT. On that last scan, they found some fluid near the aortic wall, and things got scary fast because they suspected a possible rupture or a hemorrhagic pericardial effusion. They panicked and rushed me straight to a major cardiology center in Boston. A day later, after even more testing, they basically backtracked and said, "Okay, maybe not a rupture, but there's definitely something going on with your heart." I spent the next few days in the cardiac unit, but they couldn't pin anything down, so they handed me off to neurology. For the next week, it was a revolving door of tests: MRIs, ultrasounds, EEGs, EKGs... they must have taken liters of blood from me. After they ruled out a heart attack based on the results, they sent me over to neuro. Interestingly, about a week after I first got admitted in Miami, most of the numbness in my face, arm, and leg actually started coming back. Then it was back to square one with neurology—nerve conduction studies, color Doppler, and a lumbar puncture. Two weeks of neuro tests later, they concluded nothing was wrong and sent me home. Since I still had zero answers after a month in Boston, I went to see a specialist at the Mayo Clinic just to be safe. They found a genetic mutation (PAI-1 homozygote), which means I'm prone to thromboembolism, but they also claimed that wouldn't cause the paralysis or numbness I experienced...
My uric acid levels were slightly high in my blood work, but I've dealt with that before; I managed it with diet and regular checkups, so that seems fine.
Also, for about a year now, I've had this black spot in my right field of vision. The doctors basically told me to just live with it and deal with it for the rest of my life.
The real issue is that every once in a while, I still can't feel my right leg. That shoulder blade gets incredibly tight, and I get these tingling sensations running down my right arm. Lately, these episodes have been happening more often and feeling way more intense.
I want to see a doctor, but I genuinely don't know who to go to. I've already been through every test imaginable and everything came back "normal," yet clearly, something is wrong. It's eating at me. I'm terrified that this is going to happen again and my whole body will just "shut down" like last time.
If anyone has any advice or has gone through something similar, I’d really appreciate it. I feel like I need to do something because these symptoms are starting to recur more frequently.
Oh, yeah, I'm 26 now. I was 24 when I was first hospitalized...
Back in late April 2010, I started feeling this tightness in my right shoulder blade. I didn't think much of it at the time, just figured I'd pulled a muscle or something and it would pass. But by May 7th, that right shoulder blade was swollen—literally twice the size of the left one. It was a Friday, and I was planning on hitting up the doctor on Monday, but then Saturday hits and my arm starts tingling. Then my leg. Then my face. Before I knew it, the entire right side of my body just went completely numb. They rushed me to a hospital in Miami where I spent the whole day being poked and prodded. They ran everything under the sun—standard stuff, vascular ultrasounds, heart scans, brain CTs, and an aortic CT. On that last scan, they found some fluid near the aortic wall, and things got scary fast because they suspected a possible rupture or a hemorrhagic pericardial effusion. They panicked and rushed me straight to a major cardiology center in Boston. A day later, after even more testing, they basically backtracked and said, "Okay, maybe not a rupture, but there's definitely something going on with your heart." I spent the next few days in the cardiac unit, but they couldn't pin anything down, so they handed me off to neurology. For the next week, it was a revolving door of tests: MRIs, ultrasounds, EEGs, EKGs... they must have taken liters of blood from me. After they ruled out a heart attack based on the results, they sent me over to neuro. Interestingly, about a week after I first got admitted in Miami, most of the numbness in my face, arm, and leg actually started coming back. Then it was back to square one with neurology—nerve conduction studies, color Doppler, and a lumbar puncture. Two weeks of neuro tests later, they concluded nothing was wrong and sent me home. Since I still had zero answers after a month in Boston, I went to see a specialist at the Mayo Clinic just to be safe. They found a genetic mutation (PAI-1 homozygote), which means I'm prone to thromboembolism, but they also claimed that wouldn't cause the paralysis or numbness I experienced...
My uric acid levels were slightly high in my blood work, but I've dealt with that before; I managed it with diet and regular checkups, so that seems fine.
Also, for about a year now, I've had this black spot in my right field of vision. The doctors basically told me to just live with it and deal with it for the rest of my life.
The real issue is that every once in a while, I still can't feel my right leg. That shoulder blade gets incredibly tight, and I get these tingling sensations running down my right arm. Lately, these episodes have been happening more often and feeling way more intense.
I want to see a doctor, but I genuinely don't know who to go to. I've already been through every test imaginable and everything came back "normal," yet clearly, something is wrong. It's eating at me. I'm terrified that this is going to happen again and my whole body will just "shut down" like last time.
If anyone has any advice or has gone through something similar, I’d really appreciate it. I feel like I need to do something because these symptoms are starting to recur more frequently.
Oh, yeah, I'm 26 now. I was 24 when I was first hospitalized...