Not so good news...

I've been away for a few days and just started reading some of the posts. So sorry to hear about the MS Susie. Are you sure the Remicade brought it to the surface? My doctor explained that if there were a hidden cancer somewhere the Remicade could cause it to spread. I wasn't too thrilled to hear that but I was soooo sick with the ulcerative proctitis I just wanted some relief. I've had two infusions and so far, so good. I am just going out and enjoying every "good" day the LORD gives me because I don't know what could be lurking around the corner.
I sure will keep you in my prayers.

Hey again :)

Love4cats, I did read the article pb4 posted, very promising... Also there is a stem cell transplant you can do... but that one sounds really scary to me.. they have to kill off your existing bone marrow with massive Chemo, then they do a stem cell transplant.. Supposedly it's supposed to rebuild your bone marrow with someone elses stem cells, therefore building an entire new bone marrow, blood and immune system that isn't attacking you... also promising, but SCARY... eek...

Christine, We're not positive that the Remicade brought the MS to the surface, but my GP and GI says it does seem strange that my numbness and a few other MS symptoms started around 3 weeks after my first infusion.. When I talked to my GI today, he said he did some online reasearch and did find a correlation with MS and Remicade, but it's rare... (why am I so lucky... lol..) So I'm stopping the Remicade, going to the Neurologist and will probably have a Spinal Tap to confirm things.. THen I have to schedule my surgery.. I'm sooo not looking forward to that..... eek! I'll just be glad when it's over and I'm adjusting to my Ileostomy... I have a girlfriend who has a permanent ileostomy too, so I'm going over to her house this Sunday and she's going to show me how everything works, what supplies she uses, and how to clean and care for everything... She's had her ostomy for something like 18 years.. wow... I've known her for almost 8 years, (she's my hairdresser) and NEVER knew she had one, until I told her what I was going through and she confided in me to offer me support.. She even wears some of the cutest clothes and I never ever knew...

I have NOT googles anything regarding MS today.. you would be proud of me Fruitgirl and Lonie... lol... I appreciate you all being here for me.. it's comforting to come here and read replies and know I'm not alone.. even if it feels like it sometimes!

:)

Glad I can help! :)
((hugs))

Hi GLOVE.... :)

No, I'm not competely of the prednisone yet, but I am down to 10mg.. and holding strong.. I'm still going down at a rate of 2.5 a week.. or every 6 days depending on how Im feeling... I have already told myself that I'm NOT going back on that stuff.. .EVER.... If my symptoms start coming back, I'll just have my surgery sooner... and be done with it once and for all...

I'm glad to hear you are hanging in there... you are at least better than when you started and hopefully the loading doses will knock you comptely into remission! My doc is SOOOOO glad now that he didn't have me do them... I can't even imagine where I'd be now if I already had 3 infusions... which I would have had by now... eek! Keep me posted on your progress!!

And Eva Lou... I'm soooo glad too that I have a friend with a permanent Ilieo... I swear... it's like all the things that are happening to me I can see now that they are supposed to happen this way.. like I can see the reason's for it all and it makes perfect sense... I'm really looking forward to going over to her house tomorow and learning everything.. what type of appliances to buy, what kind of underwear.. (I actually found a GREAT website for underwear for people with ostomies... Ostomysecrets.com) hope it's ok to post that... if not, go ahead and remove mods.. hee hee... But they are really cute and hide the bags reallllly well!!

Well... At least I'm feeling pretty good for the most part, just have the numbness and tingling on the right side of my body and feel a bit "off kilter" like I'm a little tipsy and lose my balance easily and every once in a while I get these electric shock feelings in my feet and legs, but those only last a few seconds thank GOD.. (those ones hurt!) But all that is normal with MS and if these are the only symptoms I get.. I can live with it! Oh.. and my memory (short term anyhow) is a thing of the past.. lolol.. My friends all say I have CRS disease (can't remember sh--) so they joke with me and really help me to remember things.

Someone's looking out for me from upstairs I believe!! :)