Hi, I'm Jenn. I have been milling around in this forum for a few months trying to get answers and more info. I thought I would post my story in case it helps anyone, even a bit. It seems this MS thing is quite mysterious and effects everyone differently.
I find myself lucky to have gotten such a quick diagnosis based on some of the horror stories I have read about people not knowing what is going on with them. I also feel lucky that the MS drugs have come such a long way from what I have read. I normally avoid taking meds at all costs but I really don't feel like playing Russian Roulette with my brain and spinal cord. I am married with 3 daughters; 26, 16 and 2. I had my 1st injection of Tysabri on March 6th, 2018. So far so good.
It started on a Wednesday, my right side of my face by my nose and lips went numb and by Sunday my entire right side of my face and upper half of the back of my head was numb. I decided to head to the hospital because I knew I needed some kind of answers and I wanted them quickly. After a ton a bloodwork, a spinal tap, a cat scan of my head, an ultrasound of my neck and heart and an MRI I got my diagnosis. I did not have any other symptoms except frequent urination, a tiny bit of leg burning and I did feel the MS hug a couple times. After 3 days of IV steroids I left the hospital on the following Wednesday. The neurologist just flat out said that I have MS and left me speechless. Although I had heard MS a million times, I had no clue what it was. He said to Google it. What an ******* he is...
I came home from the hospital Wednesday, Sept 13th expecting to go back to work the next day. I was in for a rude awakening! I woke up with pain in my head that scared me so I took pain med and went back to sleep. That went away but other things started happening. Brain fog, stumbling, crazy fatigue, arm band pain, pains in my head, leg burning. My head was still numb, I kept biting my cheek. Some days I could barely put my make-up on or I would get ready to "do something" and would be too tired once I was dressed! I didn't go back to work until October 10th when everything started to settle down and I wasn't stumbling and the brain fog subsided.
Once I got back to work I still had a bit of facial numbness and had a lot of muscle spasms, under my eye would twitch along with my right lip. Then my back started getting numb in certain spots and tingling. The arm band of pain would come and go. Now, today, I experience daily: leg / feet burning, back numbness and tingling, it feels at times that the inside of my back is pushing out in spots, right side face tingling that comes and goes. Balance seems fine, occasional brain fog but not bad. I seem to be more moody and emotional.
I don't know if these current symptoms will go away. That is the mystery of MS. You never know what is in store. I choose to live my life as normally as I can and not spend my time worrying for what "could happen" but sometimes the thoughts creep into my head.
Thank you listening! I wish everyone the best, Jenn
I find myself lucky to have gotten such a quick diagnosis based on some of the horror stories I have read about people not knowing what is going on with them. I also feel lucky that the MS drugs have come such a long way from what I have read. I normally avoid taking meds at all costs but I really don't feel like playing Russian Roulette with my brain and spinal cord. I am married with 3 daughters; 26, 16 and 2. I had my 1st injection of Tysabri on March 6th, 2018. So far so good.
It started on a Wednesday, my right side of my face by my nose and lips went numb and by Sunday my entire right side of my face and upper half of the back of my head was numb. I decided to head to the hospital because I knew I needed some kind of answers and I wanted them quickly. After a ton a bloodwork, a spinal tap, a cat scan of my head, an ultrasound of my neck and heart and an MRI I got my diagnosis. I did not have any other symptoms except frequent urination, a tiny bit of leg burning and I did feel the MS hug a couple times. After 3 days of IV steroids I left the hospital on the following Wednesday. The neurologist just flat out said that I have MS and left me speechless. Although I had heard MS a million times, I had no clue what it was. He said to Google it. What an ******* he is...
I came home from the hospital Wednesday, Sept 13th expecting to go back to work the next day. I was in for a rude awakening! I woke up with pain in my head that scared me so I took pain med and went back to sleep. That went away but other things started happening. Brain fog, stumbling, crazy fatigue, arm band pain, pains in my head, leg burning. My head was still numb, I kept biting my cheek. Some days I could barely put my make-up on or I would get ready to "do something" and would be too tired once I was dressed! I didn't go back to work until October 10th when everything started to settle down and I wasn't stumbling and the brain fog subsided.
Once I got back to work I still had a bit of facial numbness and had a lot of muscle spasms, under my eye would twitch along with my right lip. Then my back started getting numb in certain spots and tingling. The arm band of pain would come and go. Now, today, I experience daily: leg / feet burning, back numbness and tingling, it feels at times that the inside of my back is pushing out in spots, right side face tingling that comes and goes. Balance seems fine, occasional brain fog but not bad. I seem to be more moody and emotional.
I don't know if these current symptoms will go away. That is the mystery of MS. You never know what is in store. I choose to live my life as normally as I can and not spend my time worrying for what "could happen" but sometimes the thoughts creep into my head.
Thank you listening! I wish everyone the best, Jenn
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