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Angry I could've had help 8 years ago

My story is very long so I'm going to try to keep it as simple as possible. I'm in so much pain that I begged a neurologist to see me because I cannot wait any longer. Previously, I had tried to make an apt and they only had January. They squeezed me in 3 weeks from now. Back in 2015 I lost some of my peripheral vision suddenly. I was living out of the country but found and went to an ophthalmologist. He didn't see anything wrong with my eyes that would lead to peripheral vision loss, but I failed the peripheral vision test. So he referred me to a neurologist. The neurologist ordered an MRI and said I probably was just suffering from migraine but I never had migraines. After, he called me about the results and said everything looked just fine and that I was probably just sitting in front of my computer screen too long and I needed to rest. At the time I didn't really fight it, living in another country it was just difficult to advocate for certain things. I moved back to the States 2 years later and had a scary vision episode. I woke up one morning and I couldn't see anything except a bright glaze over my right eye and half of my left. I completely panicked didn't know what to do. I decided to wait. I thought maybe I had slept on my face or did something else wrong to irritate the nerves. After about an hour it went back to normal. That was 2017. I seemed fine for a while, still occasionally dealing with blurry vision. And then in 2021 everything started going down hill. First I started noticing that being on my feet all day was starting to become very painful and I was having a lot of discomfort and muscle pain. I thought it was weird because I've always worked on my feet and never had any problems and started to think maybe it's because I'm just aging. I'm now in my 40s. But then that was followed by the left toes all of a sudden becoming numb and having a tingling feeling to them. Sometimes when I walked up and down steps the toes would feel like being cut with a hot burning knife Then that gradually turned into my knee on the left leg also becoming ore and achy when I would walk up and down the stairs. I went to a primary doctor who said that I was probably just over worked and needed to rest. He did an x-ray of my left foot and didn't see anything wrong with it and said that losing a little bit of weight could help with the pressure which I found very insulting because I'm not that much overweight. All of my blood work came back normal as well. I felt defeated and like I wasted my time. He didn't even ask me to follow up. A year passed and I was very uncomfortable with the tingling in my foot and the occasional knee pain. Then I noticed that I started having tingling in my left ring finger and pinky along with numbness. Pins and needles. Then 2 months ago I woke up one morning with the heel of my left foot in a tremendous amount of pain with shooting pains going up into my arch and that hasn't gone away. Everything that's happening is on the left side of my body. My vision has declined and although I can see far away just fine I can't see anything that's up in front of my face or just even a few feet away everything is blurry but not as blurry as if I open one eye and keep one eye closed it seems to be blurrier when I have them both open. The phone brightness has to be turned all the way up or I can't see the screen. I have tinnitus as well. It comes and goes as this whooshing sound in my ears- not sure if it's connected. Here is why I'm mad. I was able to use Whatsapp to get my results from the radiology lab that did my MRI overseas in 2015. They emailed it to me. I had to translate it and it may still be a little weirdly put together. But it said:

Discreet foci of FLAIR/T2 hypersignal space in the supratentorial white matter.

I can't believe the neurologist ignored this. Had I been taken seriously then, I could have gotten treatment for whatever this is. Even if it ended up not being MS.

  1. I am so sorry it took you so long to get a proper diagnosis, CommunityMember4e7cd6! Sadly, many people with MS wait years for a diagnosis or are misdiagnosed and it *is* frustrating!

    I have no idea why the neurologist ignored those MRI results and I am sorry that happened. Oh, goodness, and don't get me started on the weight comment! I swear that if you are anywhere outside the 'normal' range of BMI (and I think the BMI calculator is a bunch of bunk anyway), it seems like medical professionals will always focus on your weight as the culprit of all your problems. And that's just unfair. While carrying extra weight *can* have a negative impact on one's health, it obviously is not causing MS. I would have felt very insulted by that doctor's comment, too.

    I am glad you shared this, even if you felt it was a long story. It's good to read about other people's diagnosis journey and honestly, it helps others feel less alone, so thank you.


    Best, Erin, MultipleSclerosis.net Team Member.

    1. Thank you for sharing this. My neurologist completely ignored my results from my vestibular test and told me that maybe once I had MS but now its gone. Um, that's not how it works! I got so dizzy with such bad nystagmus I nearly lost my job. I find that they sometimes latch onto something else and only focus on that (which I think is understandable because it could be a million things). I have bad migraines and that's what he focused on. Never mind my constant falling over, pins and needles in my left side every night; so tired that sometimes I wonder if I'm not actually half dead and forgetting my words and thoughts. I have lesions in my brain and spine. I think i have actual ice cubes in my head. After feeling so defeated for so long, I am now waiting for a second opinion. Like you, I just want to know what's wrong with me so I can deal with it.

      1. , I am so sorry you are going through this, too. I know doctors are only human, but it's weird how they sometimes fixate on one symptom and base their opinions/diagnosis/testing off of that symptom.


        I hope you get that second opinion back soon and that you get the diagnosis and proper treatment you deserve!


        Best, Erin, MultipleSclerosis.net Team Member.

    2. Wow, what an exercise in frustration! Judging from your neurologist's remarks, the doc seems to be 1. pretty ignorant about MS, and 2. remiss in tossing off most of the symptoms you had and focusing on migraine. That kind of diagnostic model is called heuristics. It's a system that encourages them to base their diagnoses on the symptoms they see most often come through their office and what is usually causing it. So the doc tosses off a swift diagnosis based on just a few symptoms, while the others are dismissed completely.

      When some doctors did that with me in the beginning, I discovered that was the case. Only in my case, a primary doc claimed I has having panic attacks, which was complete bunk. It took two neuros to finally get taken seriously. Oh, we do have the stories, don't we? I can laugh about it now! We cope every and any way we can 😀 Hang in, Kim, moderator

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