If I could give an example of my life, I would say I was driving on smooth pavement and suddenly switched lanes to a rocky road. Yes, it will still get me to the same location I’m going, it’s just going to be a rough ride, hard on my tires and a little pressure on my engine.
I knew something was wrong, I’ve shared this in some of my past blog posts. I went years with strange symptoms that came in waves. Most of my days were spent with horrible back and joint pain. I was dealing with fatigue everyday to the point that I thought I was depressed. Strange thing was, I didn’t feel sad at all, just tired. I went to my doctors just to be dismissed of my symptoms and told my vitamin D is just low, I have osteoarthritis. If I take more Vitamin D you’ll feel better.
So I took a heavy dose of vitamin D for a year and it was still severely low. I had to advocate for myself and keep pushing my rheumatologist to the point that I begged for PT and OT since I was having issues with my hands too. I was afraid that whatever was going on with me, if I kept living like this I won’t be able to walk anymore. He gave me the prescriptions I asked for and I finally started PT and OT.
I believed him when he said that I have arthritis and that low vitamin D was the reason I was suffering.
I went back to my Rheumatologist a few months later because I was still having so much pain. It was right around the time that I needed new bloodwork, I asked him to test my ANA again we went back and forth over that test being negative but if I wanted to waste my money we can check again. Of course I said it’s not about the money it’s about the way I feel and the fact that you make me feel like I’ve lost my mind. This time the test came back positive. He didn’t give me anything to treat it other than recommending a host of vitamins to take. So that’s what I did and went on about my business.
ALWAYS ADVOCATE FOR YOURSELF!!!
I was still having issues and other things going on that made no sense. I went to see my Internist for my annual check and she recommended that I go and see a neurologist, I did my research on neurologist that specializes in autoimmune diseases like lupus, MS, etc. and also a woman, because I feel like they are more understanding when it comes to our bodies.
My neurologist was amazing! She was more than what I could ask for. She took time to review my past medical history and she had old imaging records, I was impressed! She did tell me that it could be possible that I could have another autoimmune disease that’s not lupus that causes a positive ANA and that she would test it again and go a little deeper and do a Titer test since my neurologist failed to do that.
I was so happy that she was concerned and studied about me prior to my visit. What I wasn’t expecting was finding out that I had Multiple Sclerosis, also known as MS.
Life is a gift, It feels like you have forever but it’s only a blink of an eye. Make sure you live each day fully.
-Amber
I sat there with tears welling up In my eyes as she took the time to explain everything to me. Part of me felt like she was drifting into the distance while she was talking . All could hear was you have MS.
Then we went over the imaging that I would be needing to get the stage and type of MS because right now we just know about the lesion on my brain. She wanted to do one more in depth of my thoracic and lumbar spine since my symptoms have gotten worse in less than a year and she was concerned with rapid progression and wanting to get control of it.
Next the lumbar puncture would be scheduled. Everything happened so fast and of course the tears finally started rolling down my cheeks. She looked me in the eyes and said “ I might not be able to get you back to 100% but I will fight to get you back to 90%.” Peace came over me. I wiped my tears from my eyes and then she said “you might have tough days in the beginning but you will get through it.” I was so relieved but slightly worried. She started me on a heavy dose of IV steroids to calm down the inflammation in my body. She said it’s usually the first treatment for newly diagnosed MS patients so here I am, walking into the unexpected, feeling alone and needing more answers.
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Happily Ever Amber 