Complications continue

Since I was first diagnosed in April I have been on two aggressive steroid treatments gilenya and received the first full dose of ocrevus. Felt good after the second dose of steroids but have been backsliding for a month or so. Received another round of steroids which have not slowed this thing down at all. have not gotten out if a wheelchair since I got into one in April. After another nuero visit yesterday he thinks things have now started to attack my cerebellum given my rapidly deteriorating walking and my speech issues. he's sending me to a specialist clinic in Atlanta for Urgent treatment on Monday. Need some positive thoughts and good karma. Also I will be driving to Atlanta so pray for me and the other people on the road

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  • ~Hugs n Luvs ~ ylimem This has been a big whirl wind for you, and I'm so sorry. I wish you the very best on Monday, and on your drive!πŸ’•

    Please let us know what they say ok? 😊

    Jes πŸŒ πŸŽƒ

    P.S. Here's a πŸ€ for luck.😊

  • Oh my, you have been through a lot. Hoping your appt on monday goes well and is the start of better health. Drive safe and let us know how it goes. Sending positive thoughts and prayers your way.

  • So sorry. Hope all goes well in Atlanta. Sending good thoughts, prayers and hugs your way.

  • Praying for your drive, clinic visit, and your progression, ylimem. πŸ’•

  • Are you going to Shepherd?

  • Yes. I've been there once before

  • Go there - they are nice too

  • You have lots of folks praying for you. I hope we hear a great report.

  • ylimem I'm praying that they will find a quick, aggressive treatment for you that will halt the progression of this monster. It's great news that they were able to get you in immediately. Stay positive and safe travels.

  • ylimem go luck and god bless on Monday. Drive careful. Prayers all goes well.

    Donnie

  • Prayers for your journey, treatment and wisdom of your doctors

  • When I was first diagnosed with MS I felt like I lived in the hospital. Every 2 to 3months I was receiving IV steroids.

    My Dr was aggressive. I know it may seem long, after a year in a half I did get stronger. I was diagnosed 14 years ago. I am mobile, I do have some cognitive issues and some speech problems.

    I do feel lucky! I know there are a lot worse off than me..

    Best wishes, safe traveles! Fight to be strong!

  • Sending my prayers out to you ylimem!πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

  • Hi ylimem , I will keep you in my prayers and safe travels!

  • ylimem This has been such a difficult journey for you. You have been so brave and strong. I am encouraged that others have said good things about the care you can expect at this facility in Atlanta! I hope that you won't be traveling alone. Have a very safe trip. You are on my prayer list. Please update us when you are able. Sending a virtual hug for the journey!

  • The drive was easier than I thought. Good information to have that opens my life a little more. The bad news is my doctor at shepherd was just as scared as my local nuero at my current condition. My appt started at 1 and I left at 630 after a huge set of MRI s , several blood draws and an infusion of steroids. Waiting for the results of all those tests. Really glad they're being aggressive but scary that both my nueros are alarmed. Thanks for all the support guys. It's been really really important.

  • ylimem Glad you made it to Atlanta okay! That was a long day yesterday!

    I certainly hope that they have some answers for you. Is that stating the obvious or what?! πŸ˜‰

    (Before you leave Atlanta, you might want to ask them to copy all of your scans and the associated readings onto a disk for you to take back with you.)

    Thinking of you and praying for you! πŸ™πŸ»

    Hang in there πŸ€—

    Please keep us posted. (new post?)

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