In 1997, I was a healthy 40-year-old man working construction, exercising, biking, and hiking, and I noticed a numb spot on the bottom of my left foot. I didn’t really think anything of it, but then the numbness progressed up into my calf, then my thigh. I still didn’t think much of it until I started having pain in my lower back and hips. I tried going to the chiropractor with no relief, and I tried icing it with no relief; in fact, I couldn’t feel the coldness of the ice. Then things really progressed. The numbness went into my right leg, and then I started having foot drop in my left foot but I didn’t realize it, so I began tripping and falling down. After one particularly bad fall down some stairs, I finally went to a walk-in clinic to see what might be the matter. Fortunately, there was an astute doctor there who scratched the bottom of my left foot and got a Babinski reaction that alarmed him, so he recommended that I see a neurologist.
This was all over a period of about 2 years from my first numbness to seeing a neurologist in 1999 who did an MRI and found a lesion from my T-6 to T-11. He diagnosed me with multiple sclerosis (MS), but fortunately, he didn’t put me on any MS drugs, just steroids which didn’t help. Since he mostly specialized in headaches, I went to a better neurologist at a leading hospital in the area and was diagnosed with Primary Progressive MS, but again, I wasn’t prescribed MS drugs. It was also about this time that I developed urinary incontinence, so I had to deal with that. My walking became so bad that I was laid off from my construction job for my safety, but they made sure that I was hooked up with the proper occupational therapist (OT).
Then as I progressed, I went from one cane to two, then cuffed crutches, and then got a scooter. Then my doctor sent me to a urologist, and they showed me how to self-cath which eliminated the incontinence much to my relief. I use digi-stim (digital stimulation) to have a bowel movement. Then my spasms increased, and I was taking 20 milligrams of Baclofen every four hours, but I didn’t take it at night so would have to start all over in the morning waiting for my medications to kick in. My doctor then told me about an internal intrathecal Baclofen pump. I was tested and approved for it, so in 2003 I got the pump. The pump lasts seven years and requires just a one-day surgery to replace. I get refills every three months, so I do have to be responsible for getting the refills. I have been spasm-free since then. It gave me just enough spasticity to walk.
Also about this time, my pain level was increasing. My doctor eventually prescribed morphine which worked OK. Then in about 2005, my pump doctor retired, and so they sent me to another doctor to get my Baclofen refills. That doctor told me I could get the morphine in my pump. What a relief that turned out to be. Getting the morphine intrathecally is much more effective. I went from a pain level of seven or eight to a pain level of zero to one! With the intrathecal pump, for both medications I am taking micrograms of the medication instead of milligrams, so I don’t have any side effects from either medication.
Re-diagnosed! From about 2003 to 2006 my symptoms didn’t change, and I wasn’t progressing as the diagnosis of Primary Progressive MS indicated, so I questioned my diagnosis. In 2006, my doctors, to their credit, reevaluated me. They gave me another MRI but also looked into a rare disease, Devic’s disease, or what is now called neuromyelitis optica spectrum disorder (NMOSD), and did a blood test for it. Even though that test was negative, my MRI still showed my lesion to be from my T-6 to T-11, one long lesion, so they told me that since it was one long lesion, it couldn’t be MS.
Then one day in July of 2010, I was going to transfer to my wheelchair that I had gotten a couple of years before but didn’t use much and I wasn’t able to use my legs! What to do? It took me a better part of the day to figure out how to transfer to my wheelchair using just my arms, but I finally did. I finally got to the doctor and got another MRI but oddly enough, the lesion was the same! So I now had to learn how to deal with not being able to walk at all. One thing that helped me adjust was that up until that time, I was only able to walk about 40 or 50 feet anyway, and it caused me pain, so it was actually no great loss. But I literally thanked God for getting me the wheelchair.
What has helped me through all of this is first of all – supportive people in my congregation, then good doctors, and the information I get from the Guthy-Jackson Charitable Foundation, SRNA, and the Smart Patient websites. Also, being able to help other people in my community and on the Smart Patient website is very fulfilling. One thing I did enjoy was working with Jim Lubin on transcribing SRNA symposium videos for the deaf.
What is the most difficult part of living with my rare disease? I would have to say just living from day to day knowing that there is the possibility of getting worse like blindness or quadriplegia, although I have Jim Lubin’s fine example to draw on. Fortunately I am self-sufficient and do my own laundry, cleaning, and shopping.
As to what do I hope for? Just to be able to continue to help people with my life experience.