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Being wrong would not be so bad

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. 😢

  1. No responses in 2 weeks, but I'll give an update...

    I went back to see the "retinal expert" and he changed the diagnosis from Optical Neuritis to NeuroRetinitis.

    He ignored my history with numbness and neurological pain.

    He suggested that since I had cats, they were the cause via catch-scratch disease- the problem being our cats are 10+ years old and they've been with us since they were kittens and don't go outside. And I've not been scratched by them. And doctors say it almost never occurs from exposure to adult cats, mostly Kittens.

    He also said ignored that I had 3 days of pain in the nerve behind my eye prior to the vision loss. NeuroRetinitis typically has no pain associated with it.

    He ignored that this wasn't my first episode of neurological vision loss.

    He ignored that I was not ill prior to my vision loss. No signs of an infection.

    He said the light flashes in my peripheral vision were not, as my optometrist told me, a posterior vitreous detachment, but instead related to the neuroretinitis, but never asked me how long I had been diagnosed with PVD- which was over a year now. Not exactly the pattern of an infectious cause, right?

    And he ordered blood tests for infectious causes but not an MRI to catch any lesions that would support an alternative diagnosis. It's now been almost 3 weeks since the incident of vision loss and my next followup is in another 3 weeks. The ONTT (optic neuritis test trials) output suggests that any vision loss should be followed with an MRI in no less than 2 weeks to catch possible autoimmune causes.

    This was exactly like my experience in 2016...waiting months between MRIs and visits only to wonder how long my attack would last and how quickly the lesions would heal. Indeed, the cervical lesion healed before they re-imaged it. And from early 2017 until now I've had very little activity...some minor numbness... but I was certain that when I lost partial vision on my eye that this was the necessary evidence to add to my case, but without and MRI, that's sadly not going to happen.

    1. I just want to add to this that my spouse was not supportive. She came to the appointment and heard what he said and used that against me. So now if I want an MRI, it will be against her wishes.

      1. , I'm so sorry nobody responded to your initial post. We moderators try to cover every post but some fall through the cracks.

        I think the biggest fear of people with chronic illness is not disease progression, but abandonment. For what it's worth, my biggest fear came true in 2012--my husband abandoned me for an able-bodied person. I'm here to tell you that although it hurt like the devil, it was ultimately the best thing that ever happened to me. I'm guilt- and shame-free and, seven years post-divorce, I'm more confident and able to manage my disabilities as a single person living alone. I've never been happier in my life as I am now. I have tight control of who I allow into my life. They have to be supportive, accepting and understanding. During the past year alone I've booted out a boyfriend and an old childhood friend to achieve that.

        Put yourself first. You don't owe your wife or anyone else years of suffering and emotional neglect just to please them. The price is too high; it would likely shorten your life from the sheer stress of maintaining a lie.

        Please do forge ahead towards a diagnosis. I understand how difficult it is for you right now. Your journey toward better physical and emotional health is in the early stages. It isn't fair that you have to be stronger and fight harder when you're sick, but that's so often what has to happen.

        I hope you'll keep us updated on your testing and doc visits. Best to you, Kim, moderator

    2. Thanks for your support Kim.

      My labs came back and no sign of Cat-Scratch Disease, nor any indication of TB or Sarcoidosis - all possible infectious causes for Neuroretinitis. Indeed, there was no evidence of infection at all in the CBC. Nothing elevated. It's another 2 weeks before I can talk to the eye doctor about the lab, but I'm going in today to talk with my GP and get her opinion on the matter. I skipped her in the beginning because vision loss is an emergency, but short of going to another eye doctor for a second opinion, I thought it wise to discuss the matter with her. Armed with the facts and contradictions in what I was hearing, she could request an MRI or VEP, but I worry that a lot of time was lost.

      1. Good move, sharing info with the GP. Our docs don't share our stuff with each other, so it falls to us to keep them apprised. Sadly, time lost is an unfortunate consequence of this kind of situation.

        With MS, some symptoms will become permanent while others return to baseline. If that is indeed what you have, getting on a treatment plan will improve your odds of avoiding future disability, lessening its severity, or slowing progression over time.

        Do let us know what your GP has to say. --Best, Kim, moderator

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