Undiagnosed and Uncomfortable

In December of 2017, I woke up at four in the morning with a sharp/unbearable pain in the corner of my right eye and double vision. I stood up and started to vomit. We rushed to the emergency room for an eight hour day.

The emergency room doctor said all of my tests were normal and sent me to a neurologist and ophthalmologist to check for vision problems or MS. I’ve seen a million doctors since then of all kinds, even a kidney doctors, and the only treatment I’ve gotten is for high blood pressure.

I’m exhausted and my vision has never been the same. At my last appointment, my neurologist told me to come back if I started to drag my foot or in a year for another MRI. I’m exhausted and the vision situation makes my daily work life quite difficult. I’ve always been healthy and active so this is a new territory for me. I’m incredibly frustrated and would appreciate any advice or similar stories.

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View Comments (8)
  • Debbie Gu3
    6 months ago

    What I said before is definitely true if your double vision has not gone away by now. I really think a Neuro Ophthalmologist is the specialist you need to see to get answers to what’s going on. Maybe you have the same thing I had and it can be fixed. This specialist has years of experience working with optic nerve and brain issues. If anyone can figure it out, they will be the best person to try, better than both neurologist and ophthalmologist.

  • ksims2 author
    5 months ago

    Thanks you so much for your supportive comment I really appreciate it. I’ll give the neurologist-ophthalmologist a try!

  • Debbie Gu3
    6 months ago

    ksims2, I needed to send you a post because it sounds like you’re getting the run around from doctors who really don’t know what’s going on. First, did you go to another neurologist and/or Ophthalmologist for second opinions? Always a good idea when it comes to a potential life-changing diagnosis. I’d also like to suggest you see a Neurologist Ophthalmologist, specialist that deals with optic nerve and brain problems if you haven’t, like I did. This specialist was instrumental to me in figuring out why I had double vision. Mine turned out to be not MS-related, so when she kept adding prisms to my current glasses with plastic inserts it enabled me to see single again. Once I reached 14 prisms, I started at 4, I was able to a get surgery which completely fixed my problem. It was on the outside, if someone was standing in front of me looking at my eyes, they appeared straight to them. But inside, my brain could no longer compensate to keep me seeing single, hence the diplopia.

    When MS is involved it’s obvious when someone looks at your eyes they’re not straight and prisms won’t help. A Neuro Ophthalmologist is who your Ophthalmologist should have referred you to like mine did me, instead of telling you what they did. Maybe you have something completely different than MS called NMO Neuromyelitis Optica which affects the brain and optic nerves, spinal cord too; there’s a simple blood test that can tell you if you have it or not. Research recently proved NMO is a completely different disease than MS and as such is treated differently by not using any of the MS treatments; which can actually make it worse. You’ll need to search online for yourself to learn more about it because I’m unable to attach any links.

    This is an instance where you need to “Be your own Advocate” and Stand up for yourself! Ask more questions because you deserve answers. Don’t stop asking them until someone gives you answers you want to hear. If you need to go back to a neurologist or ophthalmologist, you might think about going to someone else. The easiest way to know, did they treat you like a patient or a person? Listen to what you had to say or just tell you what was going to happen? I can tell you I’ve had the experience of seeing both and I will never go to another doctor who doesn’t listen to me again!

  • Dorry
    6 months ago

    Please take High Blood Pressure Seriously. Find out why you have this diagnosis. This is my main serious problem. If not under control it is very serious. I am on 3 Blood Pressure medications. One of the medications causes side effects of swelling of the legs. My Blood Pressure is still high reaching as much as 200. My G.P. told me last week that within the next 10yrs. I am going to have a stroke and heart attack. My High Blood Pressure is to do with age and being overweight which I can’t control as I have weak legs and can’t walk well so I can’t exercise to the level I need to lose the weight. I have built a Gym for my daughter in the Garage and I bought a lot of machines and can’t use them because of the weakness also in my arms. My doctor won’t send me to a neurologist because they don’t have the resources. So I am misdiagnosed. I have a lot of inflamation in my body and the doctor doesn’t know why? I wish I had the finances then I would go Private and get the ANSWERS I need. I always have to fight for good medical care that isn’t coming now. I live in the U.K. which makes a difference to the lack of funds for treatment and lack of care. I have visual disturbances also.
    Never ignore pain in the eyes. I had this over 30yrs ago. Working for an eye doctor and he saved my eyesight. (over the weekend when services are closed.) The Pain he could do nothing for. The pain was like being stabbed in the head several times. My husband went to the doctors house and picked up some eye cream that saved my sight. I had a corneal ulcer. (which destroys eye tissue) one can be blind within hours. So don’t ignore pain in the eye. Get help immediately. I live on Faith and this keeps me going. I wish you all the best and hope you get the answers you need. Many of us are still waiting for answers so you are not alone. Best wishes

  • joannmaxwell
    6 months ago

    Great answer by Erin! Just remember doctors only practice medicine. I went undiagnosed for many years. When I was finally diagnosed, I was so happy I wasn’t going crazy! It’s one of the worst things about this disease. Prior diagnoses can be so wrong! Hang in there, and be your own best advocate!

  • ksims2 author
    6 months ago

    Thanks, Joann. I really appreciate your comment.

  • Kelly McNamara moderator
    6 months ago

    I’m so sorry you’ve had to go through all of this, @ksims2. So many in the community have been either mis-diagnosed or have gone through similar experiences. As you mentioned seeing millions of doctors, sometimes it takes multiple, multiple opinions from various doctors which can be super frustrating. Keep us updated if you can! – Kelly, MultipleSclerosis.net Team Member

  • Erin Rush moderator
    6 months ago

    I am so sorry you are still without a definitive diagnosis, ksims2! I know that must be extremely frustrating for you. While I won’t begin to question your neurologist’s perspective on your condition, keep in mind that you can always seek a second opinion. I understand, though, if you don’t want to go through all of the testing and appointments all over again. Here is some information on the diagnostic process — https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis/. And here are some of the conditions physicians will rule out when attempting to diagnose MS — https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/.

    Also, vision problems are not uncommon with MS. Here is some information on vision issues and MS that you nay find useful — https://multiplesclerosis.net/symptoms/vision-problems/. And here is one of our contributor’s experience with vision problems — https://multiplesclerosis.net/living-with-ms/how-visual-symptoms-affect-me-maybe-you/.

    I hope you can get some definitive answers AND treatment options very soon! Good luck! Best, Erin, MultipleSclerosis.net Team Member.

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