With her husband and children at home, Rachelle was out for a jog when she felt a cold sensation in her legs.
“I was lying on my back and my knees were kind of rubbing up against each other, and I thought, ‘Oh my God, is that me?’
I was sweating so much,” she recalls.
She was diagnosed with multiple sclerosis at age 19 and spent three years on the waiting list for the disease-preventive drugs PrEP.
“It’s the one that I would use for the rest of my life,” she says.
When her doctor told her she was on PrEP, she couldn’t believe it.
“She said, ‘No, you are not on PrE.
You have MS, and PrEP is going to be the cure,'” she says, referring to PrEP’s experimental drug, Ritalin.
“And I was like, ‘That’s so not true, you don’t have MS.
You can’t be on PrED.'”
After six months of PrEP and other drugs, Rachelles diagnosis was confirmed, and the doctors decided to give her a new blood test to confirm her diagnosis.
Her doctors then told her to start taking the new medication, PrEP+, which was a trial of the drug.
But she had to be on the medication all the time.
“After six months, I had to take it,” Rachelles recalls.
“So I did a lot of testing and did a whole bunch of research and I said, `Oh, I have multiple sclerosis, and my MS is so bad, I’m not going to take this medication.
I’m going to go back to being on the drug.'”
But she found herself having to take the medication twice a day and getting blood tests every six months or so.
Rachelles says she couldn�t get to her appointments at the doctor�s office because she had trouble getting into a car seat.
“They were all in my driveway,” she explains.
“My kids were out there, so I was driving.”
After her doctors confirmed her diagnosis, Rachels doctor started looking for a more permanent solution to her condition.
She found Dr. Mark Nussbaum at New York University, where she completed her medical residency.
Nussbeck had been diagnosed with glioblastoma, a rare form of brain cancer that can grow rapidly in the brain.
After years of treatment, Rachel had lost her sight.
“He took a leap of faith and said, �OK, we are going to try to get you on a regimen of the drugs and see if we can get you better,'” she recalls of the first treatment she received from Dr. Nausbaum.
“When you see what he’s done with you, you see that you are going in the right direction.”
The new treatment, which she began taking in late October, helped Rachels vision return.
She still had trouble seeing people but could see her own face and hear the conversation around her.
“In the morning, you could tell that she was awake,” Rachels mom says.
Rachels eye doctor had her take a new eye test every day, and after one month, Rachel was cleared to see her family again.
“To be honest, I didn’t know how bad it was,” she laughs.
“But then I got a letter and a letter from my doctor saying, `Thank you so much for everything you’ve done for me,'” she said.
“We were very thankful for the medications, for the treatments, and we’re very grateful that we could have you with us.”
The two-year-old’s vision is still blurry, but her sight is returning.
She is taking PrEP+ and is doing well.
“The other thing that’s really amazing is that she’s still getting good results, even though she’s lost her vision,” Rachelle says.
“A lot of people don’t get a good result, but Rachelle is doing great, and that’s a big, big win.”
Rachelle’s first blind dating was in May, and her experience was not unusual.
But Rachelle believes her experience highlights how many people with MS are hesitant to get tested because they have a hard time trusting the medical community.
“People are scared to go to the doctor, even when they know what they’re going to get,” she said, “because it’s just a test.”
Rachelles has been diagnosed in April and will start taking PrE+ this week.
“This was the first time I really felt confident,” she adds.
“Even though I was feeling like, `I can’t get any better, this is going nowhere, this isn’t going to happen, this will never work,’ it was like this is a blessing.”
Rachel Leis has her own story of being on PrOe and coming out as a lesbian, but she hopes that people will hear her story and see the value of