About Me

  • Gender Male
  • Age 50
  • Relationship Married

My Story 0

I have yet to get a diagnoses as symptoms continue to just progress. Don't get me wrong, I still run 4-5 miles 3x a week, however, since 2015 I have been dealing with symptoms that I find more and more frustrating. It all started at the end of 2015 when I got a sharp pain in the left side of my head, everything went blurry, temporarily lost my vision in my left eye, which restored after a few minutes, and for two years I have been living with numbness on the left side of my head and into my face. Some days I feel like a stroke is about to come on, it's very weird. I went to the hospital two days later, they diagnosed me with aura migraines and put me on steroids. Had a follow up with the neurologist who continued with this diagnoses. Went for an MRI and there were 12 lesions on my brain, but the neurologist said they were no big deal. I remembered going for an MRI in 2004, which showed 2 lesions on the frontal lobe of my brain, again, told not to worry about it. I simply couldn't accept that this was a migraine and sought the opinion of a new neurologist. She has completed MRI's and several other tests, she seems to be conducting every test possible, including a spinal tap, which came back negative. I was diagnosed with occipital and trigeminal neuralgia. They administered nerve blocks and put me on gabapentin. I hated gabapentin, felt like I was in a cloud all day, so I took myself off of it and learned to live with the numbness in my head, which worsens on some days, but most days I live with it. About 8 months ago I began to slur my speech, my wife points out that my face does not look right, but the slurring is evident. I was also experiencing virtigo, which is awful. Went back to neurologist, she sent me for another MRI with contrast, still showed the lesions with no changes. She indicated that the lesions I have are not consistent with MS lesions. Who knows. The symptoms cleared up, then just in the past two weeks, I had another recurrence, this time I experienced weakness in my left arm, had trouble holding a fork, slurred speech and virtigo so bad I had to vomit. It began to clear up after four or five days, and about a week later I felt a little more normal. Over the past few months I have dealt with severe constipation, on Linzess now. I have pain in my chest, but went to cardiologist who said it was not my heart. Been to GI doctor and continue to see him. The pain extends from the bottom of my ribs, and up my left side and into my chest, it is so weird. He is not so sure there is not more of a "global issue" going on within my body, I told him about the possibility of MS, he said it couldn't be ruled out. Going for further testing this week. My gait is off some days, slurring comes and goes. I have two small holes in my heart, so I take an aspirin each day, but I am getting so frustrated and don't know what else to do. In December of 2017 I was in the Dominican Republic, while sleeping I went to move my head, I was laying on the right side of my head, I could't pick my head up from the pillow, it felt like something was biting me. I ripped my head off of the pillow and tried to check for a bug bite, my wife woke up and checked as well, there was none. I just laid there for the rest of the night with the right side of my head numb, couldn't even touch my hair because it was too painful. I saw my regular doctor on Friday who said MS cannot be ruled out. Went for what I call the dizzy test the other day, it showed I get dizzy when I look down, and when they do the air in my left ear, the room spins. I just don't know what to do anymore. I am going to try and make an appointment at an MS Center. I am tired of the doctors looking at me like I am crazy, I tell them I can be speaking and can't recall simple words, I can't focus, especially when I am dealing with what I went through a week ago. I can sleep good at night and at any point during the day I get so tired I can fall asleep wherever I may be (I actually dosed off while the dentist was working on my teeth). I found this site and was hoping others may have some insight. I had an optometrist tell me I had MS after she administered some test, but all the other tests are okay. I don't want to have MS, but I also don't want to pretend that something is not going on. I had a good laugh with my doctor the other day when he asked me about the tumor in my brain, I told him I had no such thing, he showed me the notes from my neurologist which showed I had very small benign tumor (forgot the name) in the back of my head on the right side, but it stated in the report that it was inconsequential but should be monitored, I actually had no idea, the neurologist never told me, this I am very unhappy about. I am not one to keep silent with my doctors, but they are not afraid to say they are the doctors and they know best. I do like my doctors, but I don't think they are looking at everything collectively, just individual symptoms. If anyone has any advice please don't hesitate to send me a message. This is annoying and I am tired of doctors looking at you like your crazy, or under "stress". I know when there is something wrong. Thanks for reading this lengthy story.


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