I have been feeling extremely frustrated lately. I know I previously wrote about the weird symptoms I have been having, but I feel like I need to write about it again because I am feeling angry and frustrated. Starting in September I started having issues with fatigue. It is so bad now, I feel like I am sleeping my life away. I sleep 4-6 hours in the afternoon and then I have no problem sleeping my normal 7-8 hours a night. I become short of breath easily and feel exhausted doing something as simple as laundry.
In October, I woke up one morning and had numbness on the left side of my face and my left arm felt slightly weak. I went to work and got off at noon. I went to Arby's and I was sitting in a booth eating my food. All of a sudden my hands wouldn't do what I wanted them to do. I was trying so hard to pick up the sandwich. I couldn't pick up the sandwich. I was trying not to cry, I didn't understand what was happening. I finally sort of picked up the sandwich, I tried to bite it but my mouth wouldn't work, I could barely bite and chew. All of a sudden my hands and mouth were working but then I felt really dizzy, nauseated and out of it. I drove home and walked in the door. My roommate looked at me and asked what was wrong. I knew what I wanted to say but the words wouldn't come out of my mouth. I finally spit out my brain isn't working. My roommate looks at me concerned and says what happened. I try to tell her about the Arby's incident and my hands not working. My speech is slurred and I am struggling to find words and talking slow. My roommate says I think your having a stroke, I'm taking you to the hospital. They kept me in the hospital overnight for observation. They did an MRI and CT scan and I didn't have a stroke. They did a whole bunch of blood tests - everything is normal. The Senior Neurologist says your probably having a Migraine with Aura. I say but I am not having headaches. She tells me that can happen. She tells me to go back if the symptoms don't go away or if they get worse. Two days later I go back because the numbness has spread into my ears, scalp and left side of my neck and the nausea is really bad. The doctor gives me an anti-nauseant and migraine medications through an IV. The symptoms get better, I just have a little numbness in the left side of my face. He gives me a prescription and sends me on my way. I'm driving home and the numbness comes back with a vengeance. It's in my jaw, I can barely move my mouth. Fuck the medications made it worse. I am angry and go home to bed. The next day I get up and I decide to fill the prescription, hoping it will help. I take the medications for a few days and it just makes things worse. I stop taking them. I meet with my family doctor, tell him what happened and he prescribes me Flunarizine a migraine medication they use when other medications don't work. I take it for two weeks - it doesn't help at all. He tells me to stop taking the medication. At my last appointment, this past Tuesday I tell him I really don't think this is a Migraine with Aura - I am not having headaches and this is going on almost 2 months now. I tell him my hands keep tensing/seizing up, I am finding it really difficult to do simple tasks like remove a paperclip or button up a shirt. I tell him my left leg keeps tightening up / moving. He looks at me and says I'm sorry I don't know what this is. I ask him should you refer me to a neurologist? He says honestly, not right now, you just had an MRI and CT scan they won't do another one until it's been at least three months since the last one. He tells me to rest. That's all I do is rest!! All I do is sleep! I am so angry!
I ask him about the tests we did to figure out why I am so fatigued and short of breath. He checks my results for the Exercise Stress Test and Sleep Apnea test aren't in. I have an appointment next Tuesday to follow up for that. He told me if the Exercise Stress Test comes back normal, he will send me for a breathing test to see if I have asthma.
The reason I am angry is it feels like he is just giving up. I realize there is only so much he can do, and he is trying his best. But at the same time, it does not feel reasonable to say to me "just rest". The symptoms are affecting my quality of life. I keep freaking out that I have MS. Whenever I research my symptoms MS comes up. My hand's keep seizing/tightening up, same with my left leg. I have dizzy spells, heat makes my symptoms worse. I was in a hot tub with my friend and the numbness started spreading and my entire body went extremely weak. I have never had an issue with hot tubs before. Same thing happens if I have a bath. I find it difficult to concentrate and my memory has been crappy. Quite a few times when I go to speak I have difficult saying my words - comes out all garbled. I know symptoms can be similar for several diseases. I am just so desperate to figure out what this is. Not knowing has been worse than dealing with having hiv. Hopefully I will figure this out soon. Thanks for listening to me rant.
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