3 years ago, at 43, I had my first bout with numbness in my hands, arms, face, feet and legs…sometimes my whole lower body. Those were combined with a feeling of electricity when I turned my neck, some visual disturbances, overactive reflexes, etc. So I sought help with it from a neurologist and went through a rigorous set of tests over the next year-long ordeal. They did it all, ranging from spinal tap to EMG and multiple MRIs, MRA, what seemed like gallons of blood tests. The first MRI showed a lesion, but a year later it was gone.
The worst part of the ordeal was that no one believed me. My friends, coworkers, and family thought it was psychogenic. They couldn’t see it. They were upset that I was “doing this”, and spending thousands of dollars on these tests. They thought these feelings were the manifestation of anxiety.
When all was said and done, the neurologist said the cause of my problems was yet unknown. I felt like even he thought it was psychogenic. So when he discharged me from his care, for the good of my marriage, I gave in. I trained myself to ignore future episodes of numbness and keep it to myself. I sought out a therapist because I started to believe everyone who told me I was creating this with my mind. And for the past 2 years, I dismissed any new tingling or numbness, and it seemed to be working. I had no long running episodes…just occasionally bouts for a week or 2 of some tingling, “fake” neurological pain, cognitive dysfunction….all caused by high stress, or so I had convinced myself to believe. My therapist was supportive of this ‘mindfulness’. And it was all manageable. I didn’t have a neurological disease, I was just manifesting my stress in physical sensations. Right. I just need to stop being so weak minded.
That worked for a year or so until a few days ago when I woke up after 3 days of pain in my eye and noticed a grey blob in one eye where there used to be working vision. I tried to mindfulness it away, but it was there the next day and had grown. I could no longer read with my right eye, and it only got worse the following days.
I went to see an eye doctor on the 2nd day, and after listening to my description of the pain and sudden vision loss, running an OCT, a visual field test, and putting some dyes in my eye and blinding me with bright light, he said it was optic neuritis, and then proceeded to say that they needed to look for MS and I’d likely need to get an MRI and blood work done. It was only then that I told him of my yearlong ordeal of tests and peripheral neuropathy. I go back to see a neuro-opthamologist next week.
All of this is to say, I thought I was done. I thought I had erased the psychogenic disease from my mind through over a year of therapy. I had stomached so much shame for what I had put my wife through during the year where I was experiencing neurological pain and numbness. And now… well, now here we are again.
My first thought when they said the words MS was “I can’t do this. I’ll end up divorced.” I wasn’t afraid of the possibility of having the disease or of losing my sight, I was reminded of how hard it was on my relationships and my wallet when I tried to reach a diagnosis before. I recall back then that the advice online was to keep pressing forward because diagnosis is so hard and can take years. I read stories of those who said they would have missed diagnosis had they not insisted on more testing, and those who said they had to see multiple doctors before getting diagnosed.
But the optic neuritis is undeniable. I can’t see in the one eye and no amount of mindfulness is going to change it. It’s not certain what the cause of the optic neuritis is, but one of the things I told myself when I gave up on getting a diagnosis for the numbness and pain was that I’d know if it was psychogenic or real if I ever had an episode of vision loss, and I had convinced myself that it would never happen because all of my problems were in my head.
So I still have no MS diagnosis, but I wanted to share this story with everyone. I would have preferred that I was wrong and would have been happy to live thinking that my neurological issues were a manifestation of stress and anxiety. I had accepted that shame already and tried to close the chapter on what I thought was my own hypochondria. I’ve read other similar stories of how difficult it was for people prior to diagnosis and how they were plagued with shame. I’m here to say, whether you get diagnosed with MS or not, the shame is real. It’s not acceptable to others for someone to have to muster the strength to pursue a diagnosis. There is a stigma attached to seeking treatment vs just living with it until you have no choice.
Anyway, thank you all for listening to these ramblings. I’m sure for some this rings true, and maybe others still think I’m a hypochondriac. What I know is I can’t see in my right eye, and it played out just the way others had said online. I had an MRI with a lesion visible, and no others. I was symptomatic, with oligoclonal bands in my CSF, but they were also in my serum and therefore not diagnostic criteria for MS. In one sense, I feel redeemed, but I can’t feel good about this issue returning. It’s still too early to say what the cause is. It might just be an evil and super rare coincidence that this follows the year of other symptoms, but in terms of probability, I’d say its pretty low that I’d have an isolated incident of optic neuritis unrelated to the numbness I battled for years. Why can’t I just win the lottery instead?
If anyone has advice on how to get buy-in from family members, I’m listening. My biggest fear are the fights I know I’ll have with my wife if I go forward with more costly MRIs and other tests- but I don’t feel like I have a choice. I’m not sure yet if she is convinced I’m not faking my vision loss, but the diagnostics and imaging are independent confirmation of the issue.
I’ll end this by saying its very sad to me that when faced with the possibility of something so scary as MS or losing your vision, the bigger fear is of reopening wounds and old arguments with your family related to previous attempts at diagnosis. 😢