...but now we've finally reached a point where I can at least understand what in the world has been going on with my mobility.
The saga began innocently enough while walking into the football stadium at Washington & Lee University in Lexington on October 29, 2022. After finally arriving inside the press box, I had to "take five" and catch my breath. I was just three and half weeks removed from my second bout of COVID-19, so I didn't read much into it.
The symptoms? Other than being out of breath, an unusual feeling in my legs. My back would hurt, yes, but my legs couldn't be necessarily described as "painful". The terms "heavy" and "hollow" were better descriptors.
Over several months, the symptoms were only occasional. By March, 2023, I started to notice more regularity of symptoms. After 100 steps or so, they would begin. A year into the journey, it became 50-75 steps. Some may have noticed I abruptly stopped broadcasting high school football games that October. I realized that body was telling me I had the goods to do one game a weekend, not two. So Randolph-Macon College won out.
All this time, I'm discussing with my PCP, and we're discussing specialists. First, OrthoVirginia, where I had a steroid injection in my lower back on January 9, 2024. It could work three months, a year.....and, thank God, after almost 18 months, it still has done miracles for my back.
It, subsequently, should have improved my legs. The procedure did not. From early to mid 2024, it was a gradual decline. 30 to 50 steps were needed before "it" set in. It was making it difficult to stand for long periods of time. My sister-in-law's funeral and graveside service a year ago was a battle, but she took care of me. ;)
Again in 2024, I was MIA from the high school scene on site, reporting and watching from as close as I could. Just before the year, my doctor asked how long I had been on statins, the widely used drugs for cholesterol control, especially for heart attack survivors like myself.
She had read cases where prolonged statin use could cause leg pain. I came off of them and began using Repatha, shooting myself in the tummy every two weeks. Repatha is the commercial with the talking heart pillow. :D
We hoped for leg improvement. It only got worse. Enter my second neurologist, Dr. Mary Beth Ramsey, whom I met for an EMG on my legs. I passed with flying colors.
So, over two years of feeling like I could fall at any time, EKG's, a cardiac cath, MRI's, EIEIO's, you name it.
Dr. Ramsey took over as my main neurologist and ordered a muscle biopsy, which I had performed on May 27th. I have pretty much healed from it, save the scar, of course. They took my "tiny slivers of muscle" and sent them to Louisiana State University, and to the Mayo Clinic in Rochester, Minnesota.
The report came back two weeks later, and, on June 19, we met.
***PAUSE STORY***
To understand the title of this post, I take you back to some of the earliest memories of my childhood. Until very, very recently, I never understood its appeal, but one of my favorite events every year was the Jerry Lewis Labor Day Telethon to benefit the Muscular Dystrophy Association.
I watched it religiously. For many years, I tried to stay up for the entire 21 1/2 event. I never did. But I tried! And, whether raising money with the "milk carton piggy bank" you could get at 7-Eleven to fill up with donations, to take it back to the store to give, or, a not-so-simple long distance phone call from Beaverdam to make a pledge, I was always happy when the MDA mail would arrive a few days later so I could send my money.
The glitz, the emotion, the final hour. It was enthralling. And, I get it! Some of you deplored it, for a myriad of reasons. But, personally, I never thought there was an issue. How do I learn about people who have it so much worse than I, save to "meet" them on television as I sat in my home in the middle of nowhere?
***RETURN STORY***
We tested my blood, now my muscles, for so many things, from myasthenia gravis to heart issues, vascular disease, you name it. And now, we finally knew.
I have "Immune-Mediated Necrotizing Myopathy", or, "IMNM" for short. You can read the gory details HERE from, yes, the Muscular Dystrophy Association, but the short answer is that it is one of the idiopathic inflammatory myopathies (IIM's), a group of muscle disease that involves inflammation of the muscles or associated tissues."
IMNM's "severe weakness" is usually in the proximal muscles, i.e. close to shoulders or pelvic girdle, usually with little effect on other parts of the body.
That's very true. My arms haven't suffered. My feet are good for a 58-year old. It's all about the legs, especially above the knees, left leg a bit more affected than right.
And, YES, years of taking those statins either gets complete, or at most, partial blame for all this.
So, if you take STATINS, talk to your doctor at your next visit and feel free to share my story, ESPECIALLY if you are experiencing any muscle pain or weakness!! IMNM falls into the umbrella of diseases fought by my lifelong friends at MDA.
My deepest thanks to Dr. Arpita Aggarwal, my primary care physician, Dr. Bradley Stovall at OrthoVirginia, Dr. Schulmann and Dr. Ramsey at Neurological Associates, my cardiologist, vascular team, every nurse, every human who has patiently walked with me during part of all of this process.
*****
What's next? I have begun a regimen of two medications, one for 3-4 months, and one until further notice. One must be taken with food, the other cannot. It took a week for me to get my head around it all.
Can it be healed? Yes! Can it at least improve? Of course! The next 4-6 months will tell.
As for my passionate dealings with high school sports? I'll fight to be where I can be, as I gladly continue my passion of broadcasting for Randolph-Macon College.
Your prayers and support over this long journey has never, ever been taken for granted. They won't be as I, finally, enter and tackle the next leg of the adventure (pun intended).
And, as surreal as this is, I guess I'm now officially known as one of "Jerry's Kids". :)