Picking your brain for ideas......

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Picking your brain for ideas......

Postby chowder1 » Wed Jul 16, 2014 7:34 am

I'm venting...
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
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Re: Picking your brain for ideas......

Postby Kronk » Wed Jul 16, 2014 1:57 pm

Sounds like you have had a rough go of it in the health department... The one thing I would say in regards to Copaxone is that if you had a relapse during use it doesn't mean it "failed". No MS drug will stop relapses they only reduce the frequency. Copaxone doesn't have a great efficacy and their are some side effects so you have to decide if roughly 30% reduction in relapses is worth it. Recent research shows that the longer you re on it the more effective it becomes but again weigh the pros and cons.

Your could try diet. Just pick one (I prefer Swank as it has a positive scientific trial behind it) and give it a good try for a few months. Sticking to a regimen may not be doing anythign for my MS but my mindset has improved. Knowing that I am doing everythign in my power to be as healthy as possible took a lot of the "guilt" of my illness away. What i mean is if i decline and am no longer able to provide for my family it will not be my fault. I did EVERYTHING i could to stay healthy. I am little over one year on Swank, no red meat, no cheese, no processes foods. That diet coupled with exercise has put me in the best shape of my life.

Best of luck, sounds like you are ready to try something new and not throw in the towel.
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