Re: Dana...

[Guest guest]

i've been on remecade for quite some time and the only time i can say it made a difference was my very first treatment. it's supposed to be for pain, but it also can have something to do with reducing the granulomas. > Welcome to the group, I hope you find the support> you need for you and your husband. We are a huge> family, and there for each other.> I was dxd with NS 2001. I was at deaths door when I> finally got dxd, and was on very large amounts of> steriods daily until I became toxic. I was in so> much pain in my head that I was getting shots of> Demoral 150mg 3 times per day to

just numb the pain> and keep me from crying. Yes that 150mg is correct. > than finally after my 3rd spinal tap and angi-gram,> mri's biopsy's and on the verge of crashing for> good, I got my dxd and was started on plaquneil and> Imuran, with-in 3 months my wbc started to go back> to almost normal. > so 7 years later I've finally leveled off to where I> am holding my own. > so welcome again and blessings to your husband and> you.> in Pa> > > > In a message dated 08/28/08 22:00:23 Eastern> Daylight Time, shadowme810@ verizon.net writes:> Dana> I believe each case is a little different. I have> NS, for 3 years now. I am just starting to walk> though clumsy as I am. My NS affected the right> side of my body and is now only in the

lower half. > I do have feeling and control of my limbs however> most of the time I can't tell where my feet are. I> know they are at the bottom of my legs. lol I> still get a little dizzy but take Meclazine (sp) as> I need it.> I have had my Prednisone lowered to 5 mg a day and> they are going to try and take me off all together. > I do take plaquinel and Methotrexate. I hope for a> normal life too but who knows what normal is> anymore. The best I believe I will have is as> active as I can get. I walk, with walker, I> sometimes use a wheelchair. I drive and do> everything by myself. I feel blessed because I am> here and able to try to improve. I was a biker babe> and I know I will never ride again unless I get an> expensive 3 wheeler. Who knows. > You will adapt and hopefully your husband will> become stronger. I pray he does.

Just don't give> up.> Jackie from Wisconsin.> [sPAM][Neurosarcoid osis] Re: neuro.> > > > My husband was just diagnosised one month ago.> Thanks for your email. > It is the first sign of hope I have recieved since> joining. He is on 8> mg of decadron a day. He is going crasy because> there is no sleep. > Anyone have any luck with getting sleep. He already> takes ambien and> xanax. How long before they start cutting down on> the steriods. He is> starting Remicaid but has to miss his next infusion> because of a virus. > Is ther hope for some kind of normal life.>

> Dana> > >> > i have neuro. it took 7 yrs. to diagnose what i> have after a biopsy.> in> > certain ways i feel lucky because things could be> worse. my symptoms> > were blurry vision, slurred speech, numbness in> face, arms & hands,> > confusion, loss sense or direction, loss of> memory, headaches. the> good> > news is ive gone from 60mg prednisone daily to 20> mg. lost 45lbs. and> > have a little stamina.to all of you out there my> prayers are with you> > all. but remember without God there's no strength> without stregnth> > there's no

victory. stay strong!> >> > Royce> >> > > > -- Marla Bramer Independent Beauty Consultant Kaymbramer (AT) marykay (DOT) com www.marykay. com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope