right now and for the last 3 years (since i was dx'ed and started on cade) i have developed MS type symptoms. ill go thru a few of them. i have very poor balance, i pitch sideways and fall like i am drunk. my left foot turns in and drops and i trip over it. i have pretty bad tremors in my hands face and feet, and my eyes when im concentrating will move back and forth rapidly and out of my control. i have diminished strength, the left side is worse than the right, and i have extreme fatigue issues. i have memory issues, such as i know the name of someoneone or something and i have to really search my brain hard to get it out. theres probably more but i cant think of it right now.
im under the care of a neuro who is of the opinion that remicade can have casued this. there is a mock MS syndrome where it can cause MS or symptoms of MS. he is also involved in some new crohn's research that this type of thing can happen with CD also. sort of like when our whote cells attack our stomach it can attack neurological places too. he says that the only way to know is to come off the remicade to see if symptoms improve. but theres always the chance that its permanant, or just the CD, or not even caused by the cade and i still am getting tested for MS every 4 months.
SO my question is has anyone else ever experienced any of this? i dont want to scare anyone but its something i cant get out of my head.
i see my GI next week and i am going to talk to him about it. as it is we had to double the dose of the cade becasue it wasnt working. i am about ready to throw in the towel with remicade but i dont know if its my decision to make. i mean i know ultimately it is, its my body but i have such trust in this doctor. i feel like since its not working anyway why cant we try something else. but what if the issues i have are already permanent and once om off cade i cant go back on.
i dont know im just really confused right now. i have another cade in 3 weeks then 8 weeks after that as scheduled for now and i also wonder how long were gonna wait to see if its going to help or not. i dont know how long i can wait, i dont have such a high quality of life as i had before.
i know this is a lot of questions and information but it just keeps bouncing around in my head. does anyone have any opinions or thoughts on this? or advice on how to talk to my doctor:? i need that real bad, im not sure how to bring all this up to him without it seeming like i am questioning his treatment or demanding him to do something else. just anything would help, im kind of at a loss here.
thank you so much
Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
Im 26 years old, and am currently only taking remicade, protonix and evil prednisone for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BD med. and i take some meds prn for my allergies, asthma, and migrianes.
"We are all worms but I do believe i am a Gloworm"
^always makes me smile^