Active with MS
Hi my name is Melanie. I am 38, and have been diagnosed with MS since April 2013. I was very active until about a year before my dx, because I felt "tired" and had weird pain in random places, along with vision and speech issues.
All of the symptoms would come and go with the exception of being "tired". I was starting to think I was a hypochondriac, until one day I had such bad tunnel vision I went to my GP and she did a inner ear test which somehow showed lesions. She ordered an MRI, and suggested if my symptoms increased to go to the ER (in case it was a brain tumor).
I went ahead an went the to ER because my insurance was taking over 2 weeks. I was diagnosed during that stay in the hospital. It was so quick!! I feel for all of you out there that struggled to get a dx for years. They immediately put me on Copaxone which I took incorrectly for 2 years. My Neurologist, never asked me if I used the Autoject even though I would show her my skin neuropothy (sp?). Also, no one ever asked me if I planned to have more kids, which I am not.
My new Neurologist said that Copaxone is usually given to younger patients because it doesn't affect them from having children as much as the oral meds do. Again, I was super angry to find out this news. I wasted two years of preventative care, destroying my stomach hips and thighs (I refused to inject my arms) for absolutely no reason at all.
I am waiting for my insurance to approve Gilenya. I am back to being active. I enjoy running (more like a slow jog) short distances (2-4 miles) and am considering a half marathon. I have 2 pit bulls that I am obsessed with. An understanding loving husband of 18 years and a ridiculously gorgeous, smart and talented 16 year old daughter who experiences strange symptoms like me :0/. I hope they are sympathy pains!!
I like to stay positive, some days I forget that I have this disease. I currently am experiencing something new, which from what I have read may be related to ON. The back/top of my head is extremely sensitive to pressure. I can't lie down on a pillow without it affecting my vision in turn giving me a headache and a false feeling of exhaustion. I can't sit on the couch and rest my head, unless I use the side of my face. I have been sleeping mildly aware of making sure I sleep on the side of my face, so that I can get out of bed in the morning. Ugh!
I haven't done a lot of research about this... anyone on here experience this? I hope it goes away soon... I will be getting on a plane in 30 days and won't have many options on where to put my head. This is kinda fun, I have never been a part of something like this :0) Thanks for reading!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
All of the symptoms would come and go with the exception of being "tired". I was starting to think I was a hypochondriac, until one day I had such bad tunnel vision I went to my GP and she did a inner ear test which somehow showed lesions. She ordered an MRI, and suggested if my symptoms increased to go to the ER (in case it was a brain tumor).
I went ahead an went the to ER because my insurance was taking over 2 weeks. I was diagnosed during that stay in the hospital. It was so quick!! I feel for all of you out there that struggled to get a dx for years. They immediately put me on Copaxone which I took incorrectly for 2 years. My Neurologist, never asked me if I used the Autoject even though I would show her my skin neuropothy (sp?). Also, no one ever asked me if I planned to have more kids, which I am not.
My new Neurologist said that Copaxone is usually given to younger patients because it doesn't affect them from having children as much as the oral meds do. Again, I was super angry to find out this news. I wasted two years of preventative care, destroying my stomach hips and thighs (I refused to inject my arms) for absolutely no reason at all.
I am waiting for my insurance to approve Gilenya. I am back to being active. I enjoy running (more like a slow jog) short distances (2-4 miles) and am considering a half marathon. I have 2 pit bulls that I am obsessed with. An understanding loving husband of 18 years and a ridiculously gorgeous, smart and talented 16 year old daughter who experiences strange symptoms like me :0/. I hope they are sympathy pains!!
I like to stay positive, some days I forget that I have this disease. I currently am experiencing something new, which from what I have read may be related to ON. The back/top of my head is extremely sensitive to pressure. I can't lie down on a pillow without it affecting my vision in turn giving me a headache and a false feeling of exhaustion. I can't sit on the couch and rest my head, unless I use the side of my face. I have been sleeping mildly aware of making sure I sleep on the side of my face, so that I can get out of bed in the morning. Ugh!
I haven't done a lot of research about this... anyone on here experience this? I hope it goes away soon... I will be getting on a plane in 30 days and won't have many options on where to put my head. This is kinda fun, I have never been a part of something like this :0) Thanks for reading!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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