Match strikes an arm

Certain Healing May Be Possible With MS

After living with multiple sclerosis for 22 years — I’m counting from my first bout with optic neuritis in 2000 rather than my official diagnosis in 2005 — I have the benefit of time and hindsight from which to view the disease and my journey.

My optic neuritis experience with MS

At the very beginning, everything was extraordinarily frightening. I literally woke up one morning with very blurry — like vaseline-covered glasses, everything looked warped and some things blocked out — blurry. My greatest fear was that I was experiencing a torn retina. A quick trip to my eye doctor revealed that was not what was going on. He referred me to a retina specialist in any case. This specialist quickly referred me to a neuro-ophthalmologist the very same day.

Consultations and an MRI

Yes, I consulted with three types of eye doctors in one day. By the end of the visit with the neuro-ophthalmologist, I was being referred for an MRI. The doctor also kindly informed me that my vision would likely get worse before it got better. That’s indeed what happened. I woke up the next day not looking through “vaseline” but looking through a wall of glass painted thick with swirls of various shades of gray.

The MRI revealed optic neuritis but not enough evidence for a multiple sclerosis diagnosis. I was prescribed oral high-dose steroids. I stared through that wall of gray for 3.5 months before my vision began to return.

Each eye had specific issues

In the years since this blinding case of optic neuritis, my right eye had continued to be affected. The difference in vision between my two eyes was most noticeable when I compared the appearance of colors from eye to eye and when looking into bright lights. Lights coming through my right eye always appeared much dimmer.

Another nerve issue: Arm numbness

At the time I was diagnosed with MS in 2005, my left arm was affected. For years afterward I experienced extreme numbness from my upper arm, through the forearm, and down to the tips of my outer fingers. The area that was affected could be well defined and traced back to lesions in my neck.

Slowly the numbness lessened for the most part, but never really disappeared. The numbness was always there enough that my neurologist’s pinpricks never made me jump. Sometimes the numbness would get worse again which would signal to me that I needed to slow down and stop to take care of myself.

Switching DMTs

Four years after my MS diagnosis, I switched disease-modifying therapies. The new drug was a bit experimental for me as it was actually prescribed for rheumatoid arthritis.

About a year after switching medications, I experienced an alarming amount of pain in my left arm. This happened in the two weeks between infusions for my new therapy. I didn’t know what was wrong but I knew that the pain wasn’t normal. I went to the hospital emergency department to find out what was wrong and to determine whether I needed to postpone my upcoming infusion. The doctors ran several tests including an ultrasound looking for potential blood clots. Nothing unusual could be found.

Burning sensation leading to healing

The pain included a great sense of burning. The burning probably felt extra strong to me because my arm had been partially numb for so long. I received my infusion on schedule. At least a month later, the intense burning had faded away. It wasn’t until later that I noticed the numbness had faded away also.

In hindsight, it seems like what I experienced were nerves healing, reattaching, or otherwise coming back to life. There’s no way to measure the change other than by my own subjective opinion of sensation. But even now, my arm numbness is a very rare occurrence.

Optic nerve healing too

While we are speaking of nerves healing themselves, recently, my eye doctor's exmainations reveal that it’s difficult to detect that I had previously had such a severe case of optic neuritis. For years, my optic nerve appeared pale in comparison to my left eye. I would not flinch when the eye doctor shined a light directly into my pupils. The color red appeared darker and less brilliant. And, objects in the lower right portion of my field of vision still seemed a little bit warped.

At my recent eye doctor visit, I mentioned that I hadn’t noticed many of these things in some time. My doctor brought up the photographs of my optic nerves and confirmed that there was no difference between the right and left eye. The nerves appeared quite normal and healthy. It has taken many years, but now 22 years after a blinding case of optic neuritis, you can’t really even detect that I had ever experienced damage to the optic nerve.

Healing happens in different ways

For me, healing has occurred. In my case, some healing from previous damage caused by MS was dramatic and painful, while other healing snuck up on me so quietly that I almost didn’t notice.

What’s your experience? Have you noticed any significant improvement from past nerve damage caused by multiple sclerosis? Please share your story in the comments.

Be well,

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