My MS/HSCT Journey

Today has been so hard. I can't help but feel terrified and think of the worst-case scenario. What if it's a brain tumor? What if they have to do brain surgery? Just imagining preparing for something like that scares me to death. I just can't do it. I'll die. I have been trying not to think about it or research it because I start to shake or I start to cry. I never thought this would happen to me.  I keep thinking of how much I want my mom, my sister, and most of all my grandmother. I feel like I have to be strong because I feel so alone. My family, the ones who I trust to give me logical advice in situations like this, are all dead. I guess the shock wore off and that's why I am scared. I just feel so betrayed, hurt, and overwhelmed. I just want to cry and even though I am terrified of what is wrong, I need to know what I need to do to fix it. I will do or try anything. God, just give me a chance to fix this. I went to our garage for privacy and let mysel...

Today was pretty stressful. I was terrified on the way to the neurology office. We waited for them to call us back. When they did, we sat down and waited for the doctor.  She came in, asked how I was doing, and told us that the mass was a lesion. She had said they thought I might have had a demyelinating disease, possibly multiple sclerosis but because the MRI I had done in Yreka isn't clear, they can't give me a definitive answer. She asked me if I had seen a neurologist which I hadn't. She wants me to see a neurologist and to have a more advanced MRI done at Oregon Advanced Imaging. I clarified that it wasn’t a tumor or cancer and she repeated that they wouldn’t know for sure until they had a clear image. So, I need to do another MRI and then a neurologist can tell me for sure what is wrong. So, now I am waiting for a call to schedule my MRI so I can finally figure out what is going on. My right leg is still weak and feels like I am dragging it around like an anchor. ...

    So, I went to Starbucks and to McDonald's to get breakfast for my family. When I came home, I wanted a cigarette so I sat down and as I was smoking, I felt a sudden tightness going up my leg and arm. In a matter of seconds, it got super intense, my arm folded inward and my leg extended outwards but I had no control over either my leg or my arm. I realized I was tensing up trying to fight it but It wasn't helping so I gave in and relaxed. Slowly the tightness eased and my arm and leg started to relax. My husband, witnessing the whole thing was worried and kept asking if I was okay. I told him that something wasn't right and that I wanted to go to the hospital.     When we got to the Emergency room, they hooked me to all the machines, drew blood, gave me an IV, and tested my heart. When those all came back normal, they tested me for a stroke. When I cleared that, they did an MRI with and without contrast.      Finally, the doctor came in w...

A lot of my symptoms have diminished but I still have weakness and a numbing feeling that comes and goes but it's like an everyday occurrence. I had a nerve conductivity test but it came up normal even though you could see a clear difference between my right and left sides. It's so frustrating. What the hell is causing it?  Symptoms   Sensitivity to touch has disappeared The feeling has been desensitized in my hand. My right hand especially. Touching something soft like my cat feels like touching a scratchy towel  Numbness and weakness come and go but are still a daily occurrence  Anxiety Symptoms I'm not sure about       For the last 2 years or more, I wake up in the middle of the night, and my arm or leg would be asleep and take more than a few minutes to wake up and go back to normal.     Dizziness/Vertigo - may have been because of looking down at the desk and then back up to the computer monitor too quic...