New-scared-start Tysabri on Wed.
I am new to all of this. I was diagnosed with MS in May after two one week bouts of double vision.. This diagnosis was a complete surprise, as I had previously had no symptoms. (My father had what was then called chronic progressive MS, so I was familiar with the disease as it effected my childhood and my daily life as my mother's primary support as she was/is his (and now mine) care-giver) Needless to say, I took the news I now had this hideous disease very hard.
I began copaxone within a month of my diagnosis, and had no known problems after the double vision had cleared up. My summer was spent working alot and hanging out with my best friend. (I am 33 and single and an active Aunt to my 4 nieces and nephews)
Late in August my hands quit feeling temperature, which I mostly ignored, knowing I had a follow up appt with my neuro in October; I never imagined what would happen next was even possible.
I woke up Labor Day weekend in complete pain and unable to get myself out of bed. My mom and bestfriend took me to the ER where they pumped me full of steroids and sent me home. A second trip to the ER followed where the nurse accused me of being a drug addict and refused to treat me. Then a third trip which followed the course of the first. My Neuro (don't worry I now have a new one) finally had a nurse respond to my mother's calls a week later... which led to small dose of oral steroids. By this point I had lost the use of my hands and could not walk or stand without support... and still in pain. A MRI showed I had an active lesion on my neck.
After about 3 weeks of this I got in for a 3 day dose of IV steroids, but no follow up from the nuero... I did briefly regain the use of my left hand (to a small extent) and could stand and walk short distances...
By this point a new neuro was found but we had to wait several weeks to get in. Over this course of time, I lost the ability to use my hands and again could no longer walk. By the time my first appointment came, I was nothing more than a shell of a human being. Scared. In pain. And completely shocked that this could happen to a person. A five day course of steroids followed by a fourteen day course of oral steroids followed with very little progress with my condition.
Slowly, I reacquired the use of my right hand to a minimal extent and began pushing myself again to walk. By the time of my one month appointment with the new neuro came around, I was walking fairly well and had acquired some strength with my right hand; however, I still was unable to move my right arm. I have since then reacquired the use of my left arm, but I am still in complete pain. My vision has since deteriorated, and neuropathic pain has begun. There is also much tension in my shoulders and neck making it impossible to get in comfortable positions or wear comfortable clothes. (I'll admit, I have continued to smoke throughout this course. Bad me.)
Throughout my extensive searches on the Internet, I have yet to find someone so quickly and deeply affected by this disease as I have been. This scares me and makes me feel completely alone and as though no one wants to help me. I am scared of everything, from what I eat to what I drink to even what I bath with. The pressure and the stress of not being able to work, not being able to help my mother, not being involved in my nieces' and nephews' lives, and pain that does not subside with any medication has driving me to about wits end.
I am supposed to start Tysabri in two days as the Copaxone was not working fast enough. I am JC-positive. As there's no guarantee the Tysabri or anything else will return me to my normal life, which was taken away overnight, I am sure it is understandable that I am scared and stressed. I am reaching out for anyone who can understand what I'm going through and offer me hope that things will get better, which I am not getting anywhere else. If someone could please offer me some kind of hope and give me any information that indicates that the Tysabri or anything else could take away this nightmare that I have been living, it would b greatly appreciated.