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.

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. :hug: :hug: :hug:

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...

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.:grouphug:

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.

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

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.

Oh well you can't win them all. I hope your course of your illness lightens up for you soon Scrap.:hug:

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..:)

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.

I am sorry I am tired and frustrated by all this. I went to bed one night, and the next day my entire life was gone. I have been through hell, and all I wanted was a little support, for someone to say they had been through something like this and had gotten better. I need time to experience life before this disease takes everything... I need to believe that this relapse is going to go into remission and that I will have a chance to live life a little longer. Instead I keep getting slapped in the face. I thought that by reaching out for support I would have gotten something that could of been construed as supportive. I know my experience is rare, and I am thankful others haven't had to go through this.... but this diagnosis was just sinking in when this attack happened, so excuse me for being shocked and angry this may be my life now... I was told by my former neuro that this could be as manageable as diabetes... I knew that was wrong, but I thought I would have longer than 2 1/2 months before i was facing permanent disability.

I went out to mow the lawn one morning, could not finish because I went numb from the waist down, fatigued, L'Hermittes and lost the majority of my mobility...I was 24 years old.

That was the start of a very scary, frustrating and tearful year. I added on other symptoms before I was diagnosed (3 months). The relapse it's self lasted about 4 months but it took me almost a year to regain what I had lost during the relapse. Then as my life was starting to feel "normal" again I was hit with my 2nd relapse which was like the first, but worse.

That was 27 years ago. To date, I have had 5 exacerbations (relapse, attack, flare-up). I have 2 children that were born after my diagnosis, they are 23 & 21 years old. I am still very active, use an Elliptical and a 4 station weight machine.

I have never used any of the treatments for MS.

Hi scrapnini and welcome to NeuroTalk.

It is not uncommon on message boards for threads to have more views than actual responses. You have not been diagnosed that long and sometimes, for some people with this disease it can take a year or two for it to calm down. It really is too soon for you to know if there will be improvement or not.

One thing this disease can teach you is patience ;)

Nobody here is slapping you in the face, but if you relate to us in a combative way, you are not going to get hugs and kisses in response.

I'm 54 years old and I have had some very hard and scary times with MS. I'm in a near total remission now, even at my age. :) MS can be very bad and be in total remission a couple of months later.

When I first had symptoms I thought I was going to be exactly like my niece. I thought I was on my death bed because I imagined the worst.

One thing that I've learned is that if you try to get healthy, like with quitting smoking, eating healthy and exercising, it WILL impact the severity of MS, 99.999% of the time. So put a smile on your face if you can, and focus on getting healthy and getting past this relapse and getting on treatment. We are nice folks here but we also tell it like it is. :hug: And we want you to get well.

Scrap,

I don't have MS, but I really like the folks on here, and I have friends with MS, so I read here. I have MG, and that can be a total bummer as well...

I remember when I was first diagnosed, and the only experience I'd had with MG were really sad stories. I was terrified, as I had a 1 year old at the time and wondered if I'd even get to raise her. She's 15 now, and we are both doing OK. I would suggest, based on my experience and the experiences of many others, to just let those feelings of terror go through you, and just right on out the other side. One thing I've learned is when I'm feeling really scared and panicky, kind of "step away" in your mind and simply observe your feelings. I will think, "Oh, my heart is really pounding," or "my breath is really short because I am scared." Simply acknowledging to myself that I feel bad really helps me. Give it a try!

I am also sorry for the loss of your father. Try and take care of yourself and take any support you can get. You need it right now.