Aa
have my neuro "perplexed" 2
.......neuropathy that was related to my MS. My response was my neuro says I don’t have MS. My MRI is negative and so is my spinal tap. He didn’t think so especially after his exam where he found damage in my right foot (weakness in my right toe). He referred me to an MS clinic.
The first thing the MS doc told me was that she wasn’t ruling out MS, but it didn’t seem likely. I told her I thought I was nuts and that I should be committed. She told me I was not nuts. After doing the exam I was able to actually show her one of my new symptoms which are these muscle spasms that feel like Charlie horses that happen pretty much every thirty seconds it seems like. She was able to feel them and she was quite concerned. I have lost sensory in my right foot along with the weakness, it also displayed being somewhat numb. I also informed her of how my feet felt like they were on fire when I was in my Zumba fitness class and that it felt like I was peeing my pants as the work out got more intense. She seemed troubled by my history and by my physical exam. She ordered an Anti Gaga test and explained that it was new and it was used to rule in MS. She said that we would start there and if it was positive she would eat her words about it not seeming like MS. I said okay and went had my blood drawn. She called me back within a week and said it’s positive and ordered an optic test to check my optic nerve and scheduled another appointment. I had the test and went to the appointment. She explained that now she thought that it was MS, but where to find the supporting evidence was the question because they didn’t find atrophy in my optic nerve. So she decided that she would order another MRI with contrast of the brain and C spine. Again I went with it, but she told me to call her if anything new happens. I went along my marry way with my next appointment schedule 6 weeks out.
About a week after my appointment I spent the entire weekend in bed sleeping Friday night for 14 hours the next night 16 hours and laid down all day. At first I thought I had some sort of flu or something, but it continued to sleep all day Sunday and could hardly get out of bed Monday to go to class. I woke up at 7am in a weird fog, took a shower and ate breakfast. Got to school and was meeting with a friend and my left arm started tingling. I also started feeling really strange like my head was disconnected from my body; I couldn’t think my thoughts weren’t connecting. Then my arm went partially numb, it was weird, I had a hard time explaining it. I could move it and could feel it move but I couldn’t grab stuff like my coffee cup without knowing if I was going to drop it. Also my coffee cup was a different temperature when holding it in each hand. It was weird. I tried to flake it off, but my friend I was with kept telling me that I was mixing up words such as, “Like hey lets go art side” (I meant to say outside!) I went through my day since it was midterms and tested anyways. I called the MS center after my last test. The nurse had me call her in the morning to check in.
The next day my symptoms were the exact same, I actually didn’t call her back till around noon because I was so tired! She had me come in immediately. I saw a neurological nurse prac who did there diagnostic tests and decided that I was having a “flare-up” she confirmed her course of action with my doc, based on my physical exam and the fact that I kept falling asleep anytime they left the room. They ordered a Stat MRI followed by 3 day solumedrol along with setting me up with Avonex. I went immediately to the MRI and went to the IV infusion. On day two of the solumedrol I finally wasn’t sleeping absurdly long periods of time and on the third day my feeling came back in my hand but every bone in my hand felt like it was being crushed. Very strange.
The first thing the MS doc told me was that she wasn’t ruling out MS, but it didn’t seem likely. I told her I thought I was nuts and that I should be committed. She told me I was not nuts. After doing the exam I was able to actually show her one of my new symptoms which are these muscle spasms that feel like Charlie horses that happen pretty much every thirty seconds it seems like. She was able to feel them and she was quite concerned. I have lost sensory in my right foot along with the weakness, it also displayed being somewhat numb. I also informed her of how my feet felt like they were on fire when I was in my Zumba fitness class and that it felt like I was peeing my pants as the work out got more intense. She seemed troubled by my history and by my physical exam. She ordered an Anti Gaga test and explained that it was new and it was used to rule in MS. She said that we would start there and if it was positive she would eat her words about it not seeming like MS. I said okay and went had my blood drawn. She called me back within a week and said it’s positive and ordered an optic test to check my optic nerve and scheduled another appointment. I had the test and went to the appointment. She explained that now she thought that it was MS, but where to find the supporting evidence was the question because they didn’t find atrophy in my optic nerve. So she decided that she would order another MRI with contrast of the brain and C spine. Again I went with it, but she told me to call her if anything new happens. I went along my marry way with my next appointment schedule 6 weeks out.
About a week after my appointment I spent the entire weekend in bed sleeping Friday night for 14 hours the next night 16 hours and laid down all day. At first I thought I had some sort of flu or something, but it continued to sleep all day Sunday and could hardly get out of bed Monday to go to class. I woke up at 7am in a weird fog, took a shower and ate breakfast. Got to school and was meeting with a friend and my left arm started tingling. I also started feeling really strange like my head was disconnected from my body; I couldn’t think my thoughts weren’t connecting. Then my arm went partially numb, it was weird, I had a hard time explaining it. I could move it and could feel it move but I couldn’t grab stuff like my coffee cup without knowing if I was going to drop it. Also my coffee cup was a different temperature when holding it in each hand. It was weird. I tried to flake it off, but my friend I was with kept telling me that I was mixing up words such as, “Like hey lets go art side” (I meant to say outside!) I went through my day since it was midterms and tested anyways. I called the MS center after my last test. The nurse had me call her in the morning to check in.
The next day my symptoms were the exact same, I actually didn’t call her back till around noon because I was so tired! She had me come in immediately. I saw a neurological nurse prac who did there diagnostic tests and decided that I was having a “flare-up” she confirmed her course of action with my doc, based on my physical exam and the fact that I kept falling asleep anytime they left the room. They ordered a Stat MRI followed by 3 day solumedrol along with setting me up with Avonex. I went immediately to the MRI and went to the IV infusion. On day two of the solumedrol I finally wasn’t sleeping absurdly long periods of time and on the third day my feeling came back in my hand but every bone in my hand felt like it was being crushed. Very strange.
Yes the steroids made me feel like a new person again. Thank you for your support :). Did you happen to read my other posts? My story was to long so I spread it over three post labeled "perplexed 1,2,3"
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