‘Beating the monster’ known as MS
When DeAnna Lopes was diagnosed with multiple sclerosis in March 2000, a simple task such as pulling an egg from an egg carton became difficult.
“It’s so simple, yet I couldn’t do it,” she said.
After traveling to Puebla, Mexico, for a hematopoietic stem cell transplant in January she said she has “beat the monster,” that is multiple sclerosis.
“It’s like I am out of the quicksand,” said Lopes. “Everything was such an effort before, that is if I could even do it.”
Multiple sclerosis took away the things she enjoyed and challenged her ability to control her balance: to run, ski, ride a bike, walk and even stand.
“I could barely lift my left leg a few inches off the ground and dragged it when I walked,” she said. “Now, I’m gaining more strength and balance, no more furniture surfing to keep from falling.”
Hematopoietic stem cell transplant (HSCT) is a transplant of stem cells used to stop the progression of certain cancers, but it has recently been used for the treatment of autoimmune diseases like MS.
Some people who have received HSCT have made great strides in recovery through consistent therapy, and it has even halted progression and ended some MS cases, Lopes said.
MS affects the central nervous system and the effects for its victims can be completely debilitating.
Symptoms can include numbness, trouble walking, problems with muscle control and basic body functions.
Only a small fraction of suffers know HSCT is an option of treatment for MS. Most have to travel out of state because their insurance won’t cover costs, said Lopes.
The procedure is a common practice in such countries as Russia, Italy and Mexico, but the U.S. has not widely approved it. The efficacy of the procedure has been proven successful in clinical trials, according to The Immune Renewal Foundation website. In order for HSCT to be available in the U.S. it would have to get FDA approval.
Lopes said she discovered the procedure through The California MS Facebook Group where another victim of MS was blogging about his experience.
During the procedure she discovered she was in stage six of the disease based on an estimated disability status score scale from 0-10.
“I just broke down crying after hearing it, thinking I am worse off than I thought,” she said. “I am so glad I learned about this, I would probably be much worse now.”
After 28 days of treatment Lopes celebrated on Feb. 11 for a successful hematopoietic stem cell transplant.
“I was OK with just stopping it from progressing, but I got a bonus,” she said. “I think your attitude has a lot to do with how successful the treatment will be and its outcome.”
She said she no longer has migraines or experiences the symptoms of the disease.
“Since the transplant, I have gotten some of the abilities back that MS had taken away,” said Lopes. “My ability to walk was the first thing I noticed after the treatment. I have better dexterity and don’t have to ask for help as much.”
Lopes said she has shown mass improvements which is expected to continue over the next few years. In the meantime she is improving her strength and is undergoing rituximab infusions- a type of chemotherapy that kills B cells and helps prevent the disease from returning. She is still accepting tax deductible donations to help with costs of the infusions, at https://helphopelive.org/campaign/9793
Lopes said she is happy to share her experience with others interested in learning more about MS and the hematopoietic stem cell transplant treatment.
“That’s the only way I know I can pay it forward,” she said. “You never know what kind of help is out there, unless you talk about it.”
Lopes’ experience can be followed on her blog chasingstemcells.wordpress.com or email email@example.com.
For more information on MS and hematopoietic stem cell transplant treatments visit http://www.the-irf.org.