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New-scared-start Tysabri on Wed.

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Unread 11-19-2012, 10:12 PM   #1
scrapnini
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Default New-scared-start Tysabri on Wed.

Hello,
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.
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Unread 11-19-2012, 10:55 PM   #2
Natalie8
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Dear Scrapini

I am so sorry you had to go through this. Your story sounds absolutely horrible and the medical treatment you received (or didn't receive) is unconscionable. I'm on Tysabri and while I haven't had symptoms like yours, I can tell you that I haven't had a relapse since I started it 4+ years ago. I'm not a medical expert but given your situation it sounds like Tysabri is the right choice. I hope you stay around in the forum. You will get lots of support here--everyone is warm and empathetic. Hopefully someone can give you a better answer to your questions. Good luck with your first infusion.
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Unread 11-19-2012, 11:14 PM   #3
scrapnini
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You haven't even heard the worst of it yet... by far. I have been beaten up at the ER and refused care. Thrown to the ground, while unstable and barely mobile and put in restraints with an alarm on it. Things have gone from bad to worse... been a nightmare of three months. Nurses r mean when i call 4 help w/ pain and tell me my prob is my attitude. I can't even poop...
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Unread 11-20-2012, 12:38 AM   #4
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I don't have anything at all to add since I haven't had that kind of course at all. Just wanted to send a cyber hug and say that we are listening. BTW, I am a former RN and I couldn't imagine the kind of treatment you had by nurses. If they were under my watch they would have had their walking papers.
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Unread 11-20-2012, 01:26 AM   #5
scrapnini
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seems no one has. which makes me feel crazy or something.... like some huge joke the universe is playing on me... no wonder I am scared out of my mind.
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Unread 11-20-2012, 06:44 AM   #6
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Quote:
Originally Posted by scrapnini View Post
seems no one has. which makes me feel crazy or something.... like some huge joke the universe is playing on me... no wonder I am scared out of my mind.
Sorry, still feel so alone in all this... so scared. thought i might hear something reaffitrming, esp w/ 100 people viewing this thread.
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Unread 11-20-2012, 06:54 AM   #7
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Hi there

I am sorry that you are having such a miserable time, and that you are so scared and lonely (which, from what you have said, is completely understandable).

I have had MS for eleven years, and I started with an aggressive course (though not near as much as yours). I started on Interferons straight away, and that helped considerably. I have been on Tysabri for three-and-a-half years, and it has worked really well for me, with no relapses in that time.

I am also JC+ which is scary in itself, but it is a question of weighing up the odds - and to me, it is worth it (but that was just my opinion).

Good luck, I hope this is good for you. Please don't expect instant miracles, but hopefully it will be as good for you as it was for me.

Regards

Lyn
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Unread 11-20-2012, 03:10 PM   #8
scrapnini
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So glad so many people can read my post, but no one can be bothered to reply or offer me anything based on their experiences. Further proof of my fear that this disease has made me selfish, because apparently, everyone with MS or works in treating MS are selfish too.
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Unread 11-20-2012, 06:37 PM   #9
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Oh well you can't win them all. I hope your course of your illness lightens up for you soon Scrap.

You could be a little easier on yourself and others. We are only Peeps with a disease, struggling along, just like you, here to support each other through the tougher times, but in no way, experts on your particular type of MS. We all have a different course of this carp.

Please be well..
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Unread 11-20-2012, 11:41 PM   #10
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My niece presented with behavioral symptoms. She also smokes. She has had a hard time with MS. I would highly suggest that you quit smoking if you can to see if it helps but I know that is easier said than done.

I read your post but I hesitated to respond because you reminded me of my niece in your description and I didn't want to make you think that it would be your situation just because it looked similar to me. This is a very complex disease.

You'll get better replies and responses here if you are polite and treat others with respect. This is a supportive community but we aren't all on here, all the time. These are nice people and they deserve respect and they all have the same illness to one degree or another.
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