Stem cells or chicken broth?
Because many of us with multiple sclerosis have the memory of a gnat, I’ll recap my participation in the MS-based stem cell research study at the Cleveland Clinic.
Twenty-four lucky souls were chosen to take part in this first-ever study.
Bone marrow was taken from my hips. The stem cells were separated and then cultured (because I have none!) and later infused back into my body in late November of last year.
Well, it has been three months….so let’s see what’s doin…………………..
Nothing.
Absolutely Nothing.
It's science gone wrong!
That is, unless you count the sixth finger growing on my right hand!
(Looks like it’s time to switch to mittens.)
I had been hoping for some improvement in my MS.
Some change. No matter how slight.
But I haven’t noticed any difference.
Nada.
But my doctor says “nothing” is a good thing. Being “Phase One” of the study, he says, their intent was to prove the safety of the cell-infusion procedure in humans. As it had previously been successful in mice. (Hmm, that explains my sudden fondness for cheese!)
So in regards to that, the procedure went smoothly. Not one problem!
My three-month post infusion check included a full day of testing…..
Reading standard eye charts that you would find at your optometrist, as well as charts with letters that gradually fade in boldness.
They took pictures of the insides of my eyes. And I did yet another Visual Evoked Potential Test.
The V.E.P. involves watching a dancing checkerboard TV screen while wearing enough electrodes stuck to your head to jump-start a Ford F-150.
A computer measures the time it takes your brain to register each “jump” of the checkerboard. (Sounds more exciting than it is!)
I gave them urine samples (I’m clean Lance!) and they took about a dozen vials of blood.
Those are my eyebrows--not ferrets!
As the nurse was trying to find a vein in my arm, she remarked she wished I had an area not covered in hair (I am part Yeti).
I said “Why don’t you try my forehead—there’s plenty of open space there!”
“Because then I would have to put a tourniquet around your neck,” she replied.
“My wife would be fine with that,” I answered.
MRIs. Contrast MRI. Verbal addition tests. Nine-hole peg tests. Timed walks…all in hopes of some improvement.
Again, I haven’t noticed any difference on the outside, but maybe the researchers will see something happening on the inside.
That’s what they hope for. WE hope for. For you. For me. For all of us with MS.
I go back in May for a six-month post infusion check. It will be the last visit as part of this study. I’ll keep my six fingers crossed for some positive change.
Ta-Dah!
Oh, just so you know, I didn’t grow an extra finger on my hand.
But I figured you knew that.
You are much too smart!
Keep plugging away. Keep moving. And don’t give in.
March 13th, 2013 at 11:44 pm
Thank you for the update! Your a brave man, I would have cried, I hate tests, DR.s and such! Crossing my fingers for you to improve,
Olivia
March 8th, 2013 at 5:57 pm
Thanks for the update on the growing of your fore….uh….brain….that’s it. I don’t think any of us like to hear nothing is a good sign. We want more, a true picture showing we’re doing better in some way. We all just have to keep our heads up and be happy for any day we can wake up and smile.
March 6th, 2013 at 2:13 pm
Sorry to hear there’s been no improvement that you could tell at this stage, but here’s hoping that something improves.
As for gnat-sized memory, I was going to say something funny here, but I can’t remember what it was… :-S
March 6th, 2013 at 1:20 pm
Muff,
I haven’t given up on stem cells. I believe they are the way to go. As I stated, this is just phase one—testing the safety of the procedure to the FDA.
My doc said they are studying how to tag each stem cell in order to see where it goes in the body.
Future studies will be more exact.
Baby steps, I suppose!
March 6th, 2013 at 12:38 pm
I hope this study does work for you…and many others. My memory is the size of a gnat too
March 5th, 2013 at 9:10 pm
Bummer!! Same with my 4 years on Tysabri. I told the doctor I feel the same after 4 years. Actually worse. He said I’m on the best therapy. Whatever! I thought by now we would run the next Boston Marathon togther. We can still dream………
March 5th, 2013 at 5:58 pm
I’m so hoping that this works for you! Back when I was first diagnosed with ms, I asked about stem cells, and my neurologist said it would be many years before they’d work in ms. I’d also like to prove him wrong! Good luck.
Peace,
Muff
March 5th, 2013 at 5:08 pm
Sorry to hear that there’s been no improvement (and that the sixth finger was a trick…you had me going there for a minute — I’m NOT that smart).