I'm in a massive relapse - if I ever came out of the 1st one - so I went in today thinking he would give me steroids and for 1 time since 1-31 I might feel better, but no. He told me I was already on the strongest drug (TY) that could be given. He said "You will just have to learn to live with this". He*l, I can't balance, the room goes around even when sitting, I have new sx lasting over 24 hrs, I have terrible pain in arms to shoulder blades, I have too much to even try to list.

Due to the extreme fatigue, sx, cog prob... I am home bound. Since DXed, I have done nothing but get worse! My house is a total mess, not cleaned in for ever, clothes everywhere, dishes.... I need help and he will not even give me oral steroids. This is how bad things have gotten. I can't and don't take good care of my child. I know I will have to make a desion there. I have not been out of this house except to Dr and a fast in and out on grocery since dxed.

This is the 1st time I have ever posted exactly how bad things are. I'm ashamed. I thought I would get better - not worse. I have noone to help me - all family has passed and since move here no friends. I want out of this relapse. I want to be normal. I guess they were for real when they said I has severe agressive MS. Mine seems to be fast moving.

I don't have the money for a housekeeper and nanny. Soon, I guess it will be a caretaker for me. Dam**** this and Dam**** the neuro.

I'm sorry about typos - I can't see and I hurt.

Sheena…so sorry you are having such a hard without any support.

I don’t know what kind off insurance you have but here where I live they have a service called home health care. They would come in, do anything for you, and do things around the house. I don’t know if you have thought of hospice…I thinking of trying one or the other for my DH because I have huge problems with my back and am starting to be very limited on what I can do. If you can call, your hospital and see if there offer these kinds of services…

I’m sorry but all I can offer right now is hugs and prayers!!!

Hugs, just wanted to say that you sound like you're in a bad way and maybe some kind words might help for a second.

Are there any organizations in your area for people with disabilities? I live in a small city of about 20,000 and there is a group here called ARISE that assists people with disabilities. Sometimes they can point me in a direction I never even thought to go in.

I'm sorry that there is no family to help and no friends nearby. I hope you find some sort of relief from some of your problems soon.

Hugsssssssss,
Weebs37

Dear Sheena,

I'm sorry for the terrible relapse you're in, I wonder why the neuro won't give you steroids? Others have taken them while on Tysabri? Tami gave you some good advice. I wish there was something I could do to make it easier for you. I'll keep you in my thoughts and prayers.

Your Neuro seems to be confused on the Steroids and Tysabri thing. You can't do monthly pulses, but you can do 3-5 day treatments of them.

Thank you - but no my neuro is not confused - that is just a polite way of saying you have a bad one IMO. I thank you for being so polite. I am not. I'm sorry.
He also told me there were no more fatigue meds. I pointed out one and the script was written.
I told him I would not go on the needle meds if ty failed as it seems to be on me. He said fine. He did not tell me about the chemo med nor imig. All the info I have is from the net and calls.
I don't know if these drugs might work or not or even if I am a prospect for such. I do think it should have been mentioned.

I KNOW I SHOULD BE ON SEROIDS NOW!

HHC is out of the question. I saw them mistreat and steal from my Grand-Mother; I could not stop it and I pulled in serveral dif workers... I was younger then 30ist. I even went to ones home to collect what had been stole from her.

I'm just lost in cog he@@. I can't help it. This is getting worse by the hour/day... I am not a psy case - ms caused this. Why is MS going so fast on me - do I still have a chance on TY, do I have a chance on anything like chemo....

Sheena, I don't have any advice but wanted you to know I will keep you in my thoughts and prayers. Jules

I think you should call your Neuro back and ask him again to see if steroids may help you through this. Have you had steroids before? Did they help?

Hugs and Prayers..

Sally, thank you but calling back would do no good. He was firm! I have never had steroids. I was dxed in mid Feb and mostly given no choice but TY. I could have taken this if sx had not got so bad and I understand they will get worse. Most do great but some fail on Ty.

If I have failed then dam@@@ it; it is my right. It is my right to reguest and get other infusion drugs; but I seem to me denied that right. They are FDA approved for MS!! Yes, I refuse the shots and that is my right, but why does this stop other options from being available as they are to others. Why can I not have steroids to try to stop this? Or why can I not at least try.

This is a major attack - it is not child's play. I do not run to the nuero often. This is the 1st time since dx and his own sec. cannot believe I did not get steroids. She has known me since my 1st visit and told me to go to er yest.

Sheena, I am very, very concerned about you, and about your daughter too.

I want to offer some input on your situation(s), but I need to think it through with a clear head. I will come back to this, probably in the morning.

Just one question first though . . . can you change neuros?

Cherie