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

Please Sheena, don't feel ashamed. Not EVER!

We all go through rotten times but it seems that you've had more than your fair share recently.

Have you thought of using the ER closest to you? I'm sorry if I'm outa line on that because I don't live in your country, so things may be different where you live. I personally think you need steroids, but then I'm not a physician. If you lived near me I'd be dragging you off to the closest ER to be seen by the Neuro on Call.

Is this Neuro that you've talked about the only Neuro that you've seen and if not..... is the one you saw prior still an option for you to consult? How long would it take to get into see some-one brand new if you could get an urgent referral?

I'm so sorry that I can't be more help, but I hope some-one else can come up with the magic words that will solve anything.

Please promise us that you'll never feel ashamed about coming to the group for help again. NeuroTalk is primarily a peer support group, and that's what the members here do best......support and advise.

Big cyber hhugs coming your wway Sheena, and I hope you get some answers soon.

((((((((Sheena))))))))))

I do hope someone can help you find resources to provide care for you and your dd and that you will find a doc (even at ER?) who can help

you remain in my thoughts and prayers. I wish there was something more practical I could do.

do keep posting and letting your friends here brainstorm on possible ways to get you the help you need

Sheena

Please don't ever feel ashamed to post and vent here....we all understand and would never pass judgment. I hope you can find some local resources to help you out - someone suggested the ER which might be your best bet since the hospitals have social workers who can intervene and help you find the help you need. I'm keeping you in my thoughts and prayers. Don't give up!!