Dana...

[Guest guest]

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

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] 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 8mg of decadron a day. He is going crasy because there is no sleep. Anyone have any luck with getting sleep. He already takes ambien andxanax. How long before they start cutting down on the steriods. He isstarting 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. thegood> 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>

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