Saving Mark Rosenthal
Mark Rosenthal is about to embark on the most important trip of his life – one he is confident will actually save it.
After months of extensive fund-raising efforts, the popular Insurance Forums member from Griffin, Ga., is set to depart for Pueblo, Mexico on Sunday, April 24, to undergo a 28-day experimental treatment called Hematopoietic Stem Cell Transplantation (HSCT), which will be followed by a long, intensive (and expensive) recovery period.
Rosenthal, as many forums members are aware, has been battling the progression of Multiple Sclerosis (MS), an autoimmune disease of the central nervous system in recent years, forcing him to put his successful insurance career on hold. The procedure in Mexico has the potential to stop the progression of MS in his body, which could greatly improve his quality of life moving forward.
Prior to his departure, Rosenthal wanted to take some time to thank his fellow Insurance Forums members for helping him reach the intimidating goal of $60,000 needed to pay for the treatment and other costs associated with it.
He said he wants Forums members to know he appreciates all the help people have given him and that he’s going to “fight like hell” to stop his MS in its tracks.
“Today you’re catching me on a good day. I’m feeling pretty good, I have no brain fog, and I haven’t pushed myself,” Rosenthal said during an hour-long April phone interview with Insurance Forums. “You might talk to me tomorrow and I won’t remember talking to you today.”
Diagnosed years ago
Rosenthal’s saga with MS goes back about a decade, to when he began losing vision in his right eye. “That was the first sign of MS,” he said, although a formal diagnosis wouldn’t happen until years later.
“I went to doctor after doctor and I told them look, when I get hot, something bad happens. I think they all thought I was crazy,” he said. But finally he went to see a neuro-ophthalmologist who did a flashlight test, and Rosenthal’s eyes didn’t evenly dilate. “He said you’ve either got a brain tumor or MS,” Rosenthal said. “And that was the first time I’d ever heard the words ‘MS.’”
MRIs of the brain and neck followed, showing he had lesions, and further tests about 5 years ago confirmed he had MS.
“The only symptoms I was having back then was when I got hot, I would just shut down. And then my right eye’s vision permanently altered – but when I got hot I would go totally blind in my eyes,” he said.
Dealing with these ailments and the prospect of symptoms getting worse over time was a rude awakening for the very active and involved 37-year-old, married father of five, who had been working since he was 15 and has “a brain that never stops thinking and creating things and doing things.”
Three years ago he says he could outrun anybody. And then about 2 years ago, “the best way I could describe it is, you put 100-pound weights on both your ankles. You can still walk, but you won’t do it for long. And with my progression now, what happens is [it feels like] more and more weight keeps getting added to those ankles,” Rosenthal said. “Last year I could walk an hour, and then it became 30 minutes, and today it’s about 10 minutes of standing or walking before I give out.”
After bouncing around the health care system, he ended up with Humana and went to see a doctor to get a refill for the MS drug Avonex, which keeps the immune system suppressed.
“The first thing he told me was he was not going to refill my subscriptions – I no longer needed it, and I thought that was a good thing,” Rosenthal said. “People with MS, we have to pee a lot, so I get up to go pee and I come back and him and my wife Christie are crying. I didn’t know this doctor at all and him and Christie are crying – it scared me.
“He said, ‘I don’t think you completely understand what I’m telling you. You can no longer get the shot because it won’t help you. It’s not that you don’t need it, but you’re progressive now.’”
Rosenthal figured he really didn’t know the types of MS, but he did realize it was getting worse as every day goes by.
The doctor told him he needed to come up with a “2 & 5” plan. “He said, ‘Within 2 years you will be permanently in a wheelchair. Within 5 years, your arms, and everything’s going to keep getting worse, spreading up and down your spine and you’re going downhill fast.’ And to be honest with you, I didn’t hear the rest of what he said. I went into mute.”
The reality and severity of his condition and its potential progression hit him hard that day.
“That evening I went in the backyard and I was fighting with God,” he said. “I am religious, and I was going, ‘Why me, God?’ I had no hope, and to be quite honest with you, I thought about shooting myself.”
He said he hated the prospect of anybody watching him go steadily downhill, or end up in a nursing home. The future looked bleak.
“While I was talking to God, I kind of thought to myself, ‘Do you believe God can do anything?’ Well yeah, I believe God can do anything. But I don’t think he’s going to fix this. This is MS – this is impossible.”
But then he reflected back on examples of his own kids overcoming serious medical issues over the years and turning out fine, and his own battle at age 19 with Marfan Syndrome, which had made him very weak, but is now managed to the point where you would never know he had it.
He thought if God had gotten him through all that, why couldn’t he do this?
“And I kind of almost put God to the test – God I need you! Do something! I don’t know what else to do,” Rosenthal said.
It was just two days later that a woman named Erika Grant came into his life and gave him hope. Rosenthal heard about how she had gone to Russia and had some experimental treatment done, and it halted her progression of MS.
He was skeptical at first – “You can’t fix MS – that’s crazy!”
But his curiosity piqued, he “stalked” her on Facebook to find out as much as he could about her story. She had been in a wheelchair, and she could stand up and only walk about two feet. She could no longer play the piano or really move her fingers much.
“When I first talked to her she had only been home [after the treatment] for 3 months, and she was already no longer in a wheelchair; she played a song on the piano, which I thought was amazing knowing she couldn’t do it, and I became friends with her,” he said. “And she said, ‘Mark, I want to help you learn about HSCT, and I want to help you get on the list, and show you how to do it.’ And I was still skeptical. I was tired of hearing, ‘You can cure MS if you buy this or do that.’”
He kept doing more and more research, finding HSCT clinical trials in Chicago where doctors were claiming a 95% success rate in stopping the progression of MS. This became his goal – getting this treatment to stop the progression in his body.
“I’ll never get any worse. I can still do some things now, and if I never get any worse, I’m happy here,” he told himself.
He did apply to be a part of the clinical trials in Chicago, but was quickly told he wasn’t the right fit for their trials, which were looking for very specific conditions. The potential timetable of someone with his condition being accepted for those trials was about 3 years.
“I didn’t have that. I was almost devastated with that,” he said.
He applied to experimental HSCT programs in Russia, Mexico, Israel and nine countries total. Mexico was the first one that said they’d put him on the list, which happened last August.
Next page: Fund-raising challenge
• Thoughts or comments? Please visit this new thread: Mark Rosenthal begins HSCT treatment next week
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