thinking out loud....
I want to pick your brains for thoughts/ideas...
I read on here this morning about the Wheldon protocol......that's something I didn't know about. (Not that I'm doing it. Just found it interesting.) This forum is so informative!
Saw my neuro yesterday. Had MRI a few weeks ago. MY BRAIN HAS SHRUNK MORE!!! WTH??!! UGH!!
I am still mobile. (rrms 14 years) (Walk with a limp) Balance is getting worse. (From back of my brain shrinking!) Haven't been on DMDs for 6 months. Need to start. Got info on Aubagio to take to oncologist, cause he has to OK it.
Recap: I was On Tysabri for 3 years. Worked great. Couldn't tell I had MS. Angela (on youtube) got PML:( Kinda scared me. I am JCV positive and knew it for years on Tysabri. I wasn't afraid of dying. I was afraid of LIVING with PML. So when the risk went up, I quit and decided to get a stem cell transplant. Plan was HSCT with Dr. Burt in Chicago. Just had to be off Tysabri for 6 months. Three months into it, I get diagnosed with breast cancer! YUCK! HSCT no more!!!! That was 2 and a half years ago. All is good now in cancer department. But it still throws a wrench in things just to piss me off!;) I can't take some DMDs cause of it, I will more than likely be turned down for clinical trials because of it...
I've tried Copaxone.....failed (had exacerbation)
Rebif......had to stop cause of abnormal blood work
Betaseron.......last drug I took for 5 months. Caused severe depression. I finally stopped.
Tecfidera......made me feel worse than with the chemo for cancer
Tysabri for 3 years. The only drug that worked for me, but I can't take it anymore due to hx of cancer.
I am at a loss for what to do. I'm second guessing even taking the Aubagio info to oncologist for an OK, cause I don't want to feel yucky again!
There's got to be something else. I'm 45, 5'6" 120 lbs. Not a good eater. Diet is the HARDEST to change!
But I would like your input on ANYTHING
Oh, and I tried NUCCA for 6 months. About 40 some odd adjustments. Lost count. Just recently decided to stop. Had a few great adjustments in the beginning. A few bad adjustments, too. More nothing adjustments. Lost a couple thousand dollars, but at least I tried.
OK, I'm done ranting now. Coffee's cold:( THANKS for reading!!
age: 44, rrms 14 years, breast cancer 2011