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Being wrong would not be so bad

  • By okachobi

    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. 😢

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  • By okachobi

    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.

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  • By okachobi

    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.

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    • By Kim Dolce Moderator

      @okachobi, 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

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  • By okachobi

    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.

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  • By Kim Dolce Moderator

    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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  • By okachobi

    My GP ordered an MRI, partly because she thought it should be done and partly because she felt it was something I desired to have done. Her opinion was it sounded like MS.

    I had it done a few days ago, and have seen the images. I’m not sure its capturing anything diagnostic in those images. There appears to be a lesion on my right temporal lobe, but I ran a single image by a friend who is a radiologist and he said it’s hard to tell and it could be blood vessels. I didn’t want to make him look at the whole MRI though, so I’m waiting for the radiology report. In any case, it’s a circular bright spot, dark in the middle- not visible on the slice before or after, and not visible on the non-contrast T1.

    In any case, my own assessment is that there might be a single lesion there, and the optical nerve might be enhanced- I really can’t say. But overall, I feel like I just emptied my wallet of $1000 (high deductible) for the MRI and I have a feeling the report will say “normal brain mri”. I then have the option of paying $200 for another opinion, but I may just go back to ignoring the numbness and hope I don’t have another vision issue.

    Last night, all night, I kept waking up with numb hands and feet, various sharp nerve pains, and a sensation of pulsing or vibration throughout my legs. This was just like I experienced a few years ago before it went away for a while. If it’s all in my head, I wish I could sleep without waking up to it. It’s hard enough to ignore it all day, much less in the middle of the night.

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    • By TryAgainMe

      This right here is the reason, your story is the reason I keep my suffering and pain to myself. I am so unbelievably sorry for everything that you have experienced and for the lack of support you have received. Your story is what keeps me from seeking to find out what the hech is going on in my body and my brain by going to a dr. with my symptoms. Please update their findings even if it is no MS. Don’t feel foolish and decide not to come back. Whatever you are going thru, it is real, real to you even if it cannot be seen by others.

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    • By okachobi

      Result of the test was “normal brain MRI”, just as I anticipated. I know that is a good thing…but having no explanation for the ongoing issues is difficult.

      On follow up with the eye doctor, he said they’re not sure what caused the vision problem and that we should continue to monitor it. He said that it appears to have gotten a bit better from inspection. He didn’t know my GP ordered the MRI, but said that he sometimes orders one- which I think was his offer to do so if I still wasn’t comfortable with it.

      My vision has mostly returned. I have a black spot in the right peripheral vision that looks to me like a small cloud of black “pixels”- like a speckled pattern. It’s been gradually fading over the past couple months, but it’s there there. I think my brain is just starting to get used to it. There is still a patchy grey “fog” across my central vision that causes an Amsler Grid to look a bit curvy and broken. There wasn’t an explanation for that…at least it wasn’t visible as a lesion on the retina. And as recent as today I had more eye pain. “Neurological pain” in my legs and arms has reduced somewhat and only occasionally feels like sharp needles stabbing or burning pain and weakness. It’s been lessening.

      I have no guess what it is, but the eye doctor thought the eye issue was consistent with Neuroretinitis. (nerve inflammation with retinal lesions) And I mostly agree- though there is typically no pain with neuroretinitis and I experienced quite a bit right before and at times after. Neuroretinitis is usually painless, though Optic Neuritis usually has pain…but the two overlap and neuroretinitis is a subtype of optic neuritis. But when Neuroretinitis is suspected, then it’s seen as more so of retinal issue than a nerve issue, when it’s some mix of both. Its usually caused by an infection of some sort, but my bloodwork was clean- no sign of infections.

      I’ve been wondering if it could be Sjogren’s Syndrome, which causes nerve pain/numbness and attacks the tear and saliva glands. Sjogren’s has been associated with neuroretinitis. This eye issue started with the eye in question suffering from dryness and I’m still experience extremely dry eyes. I was told that they felt this was unrelated. I was waking in the night with 1 eye being severely dry and using eye drops prior to the problem. I am also still having peripheral flashes of light- primarily in the eye with vision loss…mostly at night. The eye doctor admitted that it might be a posterior vitreous detachment, but said its rare to occur so early. PVD is supposed to pass in a few months after the vitreous completely detaches…this has been going on for over a year.

      So I’m no more the wiser than before about what is happening… I feel like I’m waiting to lose vision again with nothing I can do to prevent it. I ignore the pain/burning/numbness and weakness when it occurs, but it’s not that bad really.

      I’ll follow up on this thread if I find anything more. I’m certain these symptoms aren’t psychogenic, particularly the vision loss. But I can’t show someone the nerve pain. They might not be related though…which would be odd, but who knows.

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    • By Shelby Comito Keymaster

      Although getting a diagnosis can be really overwhelming and difficult to accept, many of our community members have shared how not having a clear diagnosis is even harder. Thank you so much for keeping us posted @okachobi and we hope you’ll continue to do so. You’re in our thoughts! 🧡- Shelby, MultipleSclerosis.net Team Member

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  • By TryAgainMe

    Thank you for your reply. I am happy to hear that they no lesions, however I am sure some part of you is a little disappointed as having a diagnosis would be validating for what you are experiencing. You may hope or believe that with some diagnosis that validates what you are experiencing it will also cause those around you to gain understanding and even empathy beyond just the cognitive level, perhaps that they would even have more compassion for your limitations and the pain you are in from discomfort to intense. I also hope for that. However, my logical mind tells a story much more like this: If my spouse does not or cannot accept what I them is going on and they choose to believe that I am faking my symptoms or exaggerating them for attention and that I am also faking my limitations so I can get out of doing things that are expected of me simply because the doctors have not been successful in determining a cause, then likely very little will change even with a diagnosis. When it comes to our spouse and our children accepting that we are no longer the person they once knew and are not as capable of the things were in the past, also realizing that we will never be that person again and it could and often does get worst over time. There is this mental block that they put up to deny what is real because to these people we are the rock. The glue. The hero. We are superman and superwoman and we cannot be fragile, because this idea is not in line with who we are to them. Our spouse believes that we will grow old with them and we will take care of each other in our old age. That where they are weak we will be strong and visa versa. No spouse wants to believe that the person they married will, over time become less able or leave this world to soon and they really don’t want to accept that their partner is suffering with something they are helpless to change. I think this denial is entirely sub-conscious and that if they did accept these things were your reality they themselves would not know how to process what you are experiencing. They could not, on some level, have the depth of understanding for what you are going thru and because of this they cannot reach true empathy. Without true emotional empathy, there level of compassion for you will likely never meet the degree of your suffering. If they do come to the knowledge and understanding through you getting a diagnosis, defensiveness will be their first response. After all truly empathetic people who deny compassion to someone genuinely hurting because they don’t believe them and later their pain is validated how can they process their own callousness in the face of additional pain they have cause you emotionally and a lack of compassion that spur them to help you by lifting some of your burden and accepting your limitations. I think that a diagnosis may do nothing to alter their compassion, because they likely won’t be able to process their own cruelty toward you. I hope I am wrong but this is what I see in those who do not believe that someone is suffering if they cannot see the cause with their own eyes. So much of what you describe is invisible on the outside. Please do not deny yourself by telling yourself what you are going thru is not real, when you do this, you betray yourself, abandon yourself and even worse you punish yourself for everything about yourself that has changed. A person can only survive for so long before they breakdown in every possible way due to self-hatred, self-loathing and self-disgust. You have enough people in your life that by denying your reality are tearing you down, you need to be on you own team, on your side you need to be self validating. Also spend some time mulling over the thing that have caused great pain in your life, possibly childhood trauma that as a child you were unable to process or have not processed properly due to your inability to reason what was going on. Even if you think you have gotten over something or that a particular even didn’t affect you, look deeper. Something like the absence of a parent in childhood or a very critical parent whose standards were attainable, a parent who suffered an ongoing illness, chemical dependency, mental health disorder. All of the above have a profound affect on children and even affect how their brain develops and how they experience pain and process emotions. I pray this is helpful in some way. I hurts so incredibly deeply when the people who say they care about are the very same people who, due to ignorance or malice, inflict the most horrific pain. Because emotional pain cannot reason between ill intent and ignorance. Blessings

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    • By Shelby Comito Keymaster

      Thank you so much for sharing your perspective, encouragement, and support with others here @tryagainme!
      – Shelby, MultipleSclerosis.net Team Member

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  • By Mike72

    Hi, the story I read from okachobi is just overwhelming for me to read. I cannot fathom how it would be to not have support of your family? I’m very lucky that my wife and kids have supported me through this so far but I can see at times it’s wearing thin.
    I had Glandular Fever around 3 years ago which really made me quite sick. It took around a year to get over it but kept having what seemed to be relapses of it although I’d go to my doctor and he’d say there was nothing wrong with me.
    Eventually I got back to the gym and cycling every other day. I work 2 on 2 off for an oil and gas company in the desert so it’s very physical work in extreme heat but I’d do my 12 hour day then head to the gym as normal. About a year ago I was at the gym and was doing lunges, I noticed every time I’d try I’m right leg I’d fall over. It’s was a bit embarrassing as the gym was full of roughnecks the size of a house and here’s me falling over carrying a 2 kilo weight. Anyway as time went on I started to get very fatigued, I got to the point where I’d be struggling to do my days work, I’d go back to my room, have a shower and collapse on my bed. When I’d lay down I’d have horrendous pain in my feet, I put it down to walking around in 40-50 degrees of heat, but then I’d get to a very relaxed state and I’d start to jerk involuntary, it got that i was struggling to sleep as it would keep me awake. As time went on the fatigue was getting worse and I started to get burning pain in my legs and arms. I noticed I had no feeling in my right forearm at all and the tip of my thumb was completely numb, constant tingling and burning sensations. Then I get 2 very bad bouts of vertigo, it lasted for hours and made me very nauseous. When I went home I told me wife that i was really struggling at work, I’d always been a very hard worker and this was depressing me as I just couldn’t keep up, I was forgetting things, losing track of what I was doing and dropping everything I tried to pick up with my right hand, I was putting myself and my work mates in danger as I couldn’t do it!?! I went to my doctor and told him what was happening, he thought it sounded like rheumatoid arthritis so he sent me for a series of blood tests all came back fine? He said there is nothing wrong with you? I was bemused but I accepted it and went back to work even though I was still dealing with all this neuropathy and fatigue, I was also having issues going to the toilet, I’d be constipated for days then end up with severe diarrhea for days after. I went back to work knowing I had an issue and trying to fight it as best I could, but I couldn’t, I best myself up over and over, saying to myself “you’re weak” “you’re lazy” “you’re a waste of space” but the pain and numbness wouldn’t subside. I was so tired, I literally couldn’t lift my head, it was near the end of my 2 weeks and I just couldn’t move, I collapsed in the middle of the floor at work and wept. I was so over it. Luckily no one had seen me so I dragged myself up and went back to my room. I was flying home next day and I was determined I wanted this fixed. I decided to go to another doctor. I told him my issues I’d been having and told him how depressed I’d felt as I couldn’t go to the gym anymore and I was struggling to do my job anymore. He tried me on a course of steroids for week and said come back and we’ll talk about his you feel after these. So I took them, but they did nothing. I went back and he had another doctor with him. They asked where I was born, I said Edinburgh, Scotland. They then checked my date of birth? Then they asked me about all my symptoms, I at last felt I was getting somewhere. At the end of the appointment he said, I’m not 100% sure but I think you may have MS or something similar. I was dumbstruck but in a sense relieved that I might finally be getting an answer. He referred me to a neurologist and I went to see him. I wished I hadn’t. It seemed he’d made a diagnosis before I’d even got in the room. He asked me a serious of questions, I felt almost like he was trying to catch me out? I looked at my wife in disbelief, is this actually happening to me? Why is this guy acting like this? He then did a series of manual tests and spoke to me some more. He hinted toward psychotherapy, I asked him straight out, “do think this is psychosomatic” he nodded yes. I was overwhelmed with anger, but I kept it to myself. I thanked him, shook his hand and left. I could not believe someone would question my integrity, I could not believe it, why would I make this up? It was hopeless. Anyway, he arranged me to go for an MRI and it cane back with a hyper intensity on the left frontal lob but was said to be clinically irrelevant. I’m still waiting for my nerve tests but to be honest with you I don’t hold out much hope, and while all of this goes on around me I’m still in pain, still struggling to walk on my right side and still so tired at times I can’t get out of bed. Anyway, I hope I’ll get an answer soon as I feel I’m losing my mind. Thanks, Michael.

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  • By Mike72

    I also wanted to say that my symptoms have progressed from there, I now experience zaps down my neck when I move my head, muscle spasms especially in my legs and consistent twitches that last for hours and various places around my body, all of which make me even more worried about what the hell is going on with me?

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  • By Kim Dolce Moderator

    @mike72, your story is a familiar one: misdiagnosis followed by a neurologist with a fondness for conversion disorder, aka hysteria, it’s all in your head. Or it’s stress, you’re having panic attacks, or you’re attention-seeking or drug-seeking; the gaslighting can be brutal.My first neuro told me I was suffering from stress or depression. I knew it wasn’t true and pressed on until I found a neuro that took me seriously. I strongly recommend you seek a second opinion.

    In addition to a brain MRI, history and physical exam, MS diagnostic criteria include a c-spine MRI, lumbar puncture and EPTs. My first brain MRI showed no lesions, but I had two in the cervical spine. Nerve damage can start in the spine, yet many neuros skip the spine MRI and only do the brain.

    Those zaps down the neck are called Lhermitte’s sign. It’s common for MS patients to experience this. The spasms, balance problems and weakness can be treated without having a diagnosis by using a combination of medication and physical therapy. Ask a doctor you can trust to discuss your options.

    As frustrating as it is to chase a diagnosis, it does boil down to relentless detective work to eventually crack the case. I hope you’ll keep us updated as you find out more. Best, Kim, moderator

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    • By Mike72

      Thankyou so much Kim, I really appreciate you responding to me, I’m at my wits end if I’m honest but it’s great to talk with someone who knows what I’m going through. Thankyou again and I’ll let you know how this go. Mike.

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