It didn’t come as a surprise. We had suspected it for months. In fact, my neurologist referred me over the local multiple sclerosis specialty clinic after seeing my symptoms. But still, there is something different about hearing those words come out of a doctor’s mouth.
It wasn’t a surprise. But hearing those words out loud still sent some shockwaves through my soul.
“Well the timing isn’t great,” I thought. It was November 2018 and just a couple of days after my husband was diagnosed with cancer – the Non-Hodgkins Lymphoma type. And our daughters were experiencing major health issues.
But is there ever a good time to get news like that? Not really.
My biggest fear is that I would no longer be able to help care for them. And I was the only one well enough to work. We would be losing my husband’s medical insurance in a month and I would be the one that carried the medical insurance. I need to be able to work full-time. And lately, some days that seemed like an impossible task.
My doctor explained that MS has no known cure and that treatment plans are designed to help slow the progression of the disease and treat the symptoms.
“How long have you had symptoms?” the doctor asked.”
I thought back to three years earlier where I fell nearly every day for 10 days in a row because I kept losing my balance. I fell three times in one day trying to get into my office after a lunch break. Back then I had blamed it on the herniated discs in my lower back. But that never felt quite right. I just didn’t have any other explanation for it.
I thought of the bladder and bowel issues I had suffered from for years. And the time I ended up in the ER because I suddenly lost vision out of my right eye.
And the time I experienced heat exhaustion and had to be treated by the EMTs at a football game a few months before.
I had experienced plenty of MS warning signs.
The doctor thought that the temporary vision loss was very likely to be due to MS. He figured I have had it for at least 5 years, probably more. In fact, I had experienced many MS symptoms for close to 40 years.
I am a very firm believer in the power of diet and alternative therapies to reduce and often eliminate disease. I researched various MS diets, alternative treatments, and more during that week.
The doctor gave me a listing of potential disease modifying meds to take home and research. When I returned a week later I was to let him know which option I wanted to go with. But first they had to do some blood tests to test liver function, test for infection, and test for the JC Virus.I returned to the clinic, one week later, and learned I was in fact JC Virus positive. That meant I was at a greater risk of developing PML. Progressive multifocal leukoencephalopathy (PML) is a rare and often fatal viral disease characterized by progressive damage or inflammation of the white matter of the brain. The average life expectancy for someone developing PML is just six months. What it meant for me is that would have to start out with meds that were the least likely to lead to PML.
In the end, I decided to go ahead and treat with the traditional medications, while also doing what I can to hit it with diet, alternate remedies and treatments as well.We started with Aubagio, because there was only one known case of PML in patients treated with it, and that patient was first treated with another med that had some known cases of PML.
I hope to share information on my Multiple Sclerosis journey here, as well as some of the other health conditions our family is going through. Hopefully, it will help others who are going through the same thing.