[Pink]

Well I don't even know why I am here. I guess this is the only place to be tonight. I've had approx 17 or 18 tysabri infusions since I was Dxed and now 2 relapses in less then 2 yrs. I've only had approx 6-7 mos since I was Dxed when I was not in a relapse. I'm in a major relapse now and I need your help. I'm scared. Mri shows active on left & right parietal lobe. That was inactive b4. I've had 5 home health iv infusions of steroids and 0 improvement. This relapse in past 2 mos was coming for about 3-4 day and then it would let up and come back. B4 the roids it was full up for 7 plus days now back again. It started back up while I was on 3rd day of roids. I have no idea of what to do.

I have a Dr with knowledge but to be honest, I am not one who is liked much. I've had so many problems out of his so called nurse and her staff; I have grounds to go after their med lic. I cannot even get my medical records. Yes, they will not send in violation of law. They finally sent to one place requested but not to me as requested. Sure, I'll sue them and take the lic - all on tape, but that does me no good. I want to walk... I want treatment. I paid them to care for me not toss me off, yell at me and treat me like s**t. Yes, I have it on tape, all but the 1st time they yelled.

I'm lost. My arms to hands, legs to feet on both are very weak. If this continues I see me in a chair w/o movement from neck down and I see it as possibly now. I can not live that way. Forget attoneys; I have them, but no time due to relapse. What are my treatment options? Any help please. My lesions are all in the wrong place; they control all of me. The hospital will not take me unless a Dr puts me in for roids and there is none. I think the stress of this Major and well know facility has put me into this relapse. But, it does not matter - now only matters. I fear I'm going to lose my life here guys; please any help.

Thank You

I know I have rambled; that is just the way I am now. I am sorry.

[ewizabeth]

I'm so sorry that your MS is so active. Maybe the Tysabri isn't working? Does your neurologist think you should continue the infusions under the circumstances? I wonder if another medicine would work better?

Are you seeing an MS neurologist? Or is it a general neurologist? Under the circumstances, if I were you, I'd see another specialist for a complete evaluation. Tysabri should be helping keep relapses under wraps. Take care and keep us posted.

[Pink]

Yes, he is a MS neurologist, but I have only seen him for 5 min one time. All care in in the hands of nurses. I agree about tysabri, but there is no other option except LDN. Yes, I can get it and thought about it, but I need to know if there are any options open to me now. Or do I just hang here and get in a chair. This is moving in fast and hard. Thank you for your reply.

[Pink]

K - I know no one can really help me and I know u all want too, but there comes a time when there is no hope. So, I'm cutting out and going to bed. B4 I could go to sleep and in the morning I would have 30min to a few hours without feeling the weakness,,, now I awake to it. God, I just wish I did not have this. Yes, pity time. Have a great night everyone.

[Catch]

Surely you have another doctor in your area? Even a GP at this point can see you need help now!

[SallyC]

(((((((((Pink))))))))) I hear you.

Please find a better Doctor to help you. They are out there. And come back in the morning to talk to us..Sleep well.

[poochie]

Hi Pink, I was having attack after attack, I started on LDN and they stopped, this was 5 years ago, it may not be for everyone, there are no side effects to speak of, my approach was I had nothing to lose. I haven't had IV steroids since. Please let us know how you are and your decision. Be well.

[Dejibo]

Pink! you sound frustrated and exhausted!

PLEASE go see a NEW MD and allow that office to do the fight for your records, your history and your treatment. You should NOT be carrying this load on your own.

KEEP A JOURNAL! Make sure you get to someone who is gonna take care of you, and if not, hit the exit!