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    Frustrated :(

    Hi,
    my name is Ashley. Iím 30 (31 in November) Iím new to this forum, in fact iíve Never been on any kind of a forum before but decided to give this a try.
    I live in Newfoundland, Canada. In April of 2017 (I was 29 at the time)I took a trip to Alberta to visit my sister. It was a very long and tiring trip to get there. The day after I arrived, I woke up with a blurry left eye. It was almost like a film was over my eye. I didnít think much of it, I thought it may of been from pressure changes from flying. After a day though, the blurring in my eye got significantly worse and my eye hurt when I would move it. I decided I should see a optometrist as I was afraid my retina was detached or something. I went to the eye doctor and did a ton of tests to find out I had retrobulbar optic neuritis. The optometrist also told me that I needed to have 3 days of IV steroids and 10 days of oral steroids. He then told me I needed an MRI because there was a 40% chance i could have MS.

    All I could think was WHAT?! How could I possibly have MS? I mean I didnít know anyone with MS, and it didnít run in my family (which before all this, I thought it was purely familial) anyhow when I got back home to NL, I got an MRI, and my neurologist told me that there were lesions on my brain. She didnít say how many or how big they were and I canít remember where she said they were on my brain(I admit all the info was overwhelming at once) but other than the optic neuritis, and and the lesions, I had no other symptoms of MS. It has been a year and a half since I had optic neuritis. I didnít regain my vision fully in my eye, itís still very blurred. I had another MRI in April of this year and there wasnít any changes, no growth in the lesions and no new ones .

    My neurologist suggested a lumbar puncture, so I had that done in June. I got the results from the L.P. 2 weeks ago and found out it was positive for [COLOR=rgba(0, 0, 0, 0.870588)]Oligoclonal bands. My neurologist said that even though the L.P. Came back positive, everything still wasnít enough for a diagnosis. Something either has to change in my MRI, or I need to have another symptom.

    My question is, does anyone else have a story like mine? Are you still waiting to find out if you have MS or not? I am frustrated because itís already almost been 2 years ( I know a lot of people have been waiting a lot longer) Iím scared that I will get another optic neuritis flare up in my right eye and completely lose my vision. That is my worst fear right now because If that happens, I will not be able to work anymore (Iím a medical laboratory technologist) I just graduated from my program in 2016, so I have only been working for 2 years. I guess iím Just scared and I donít know anyone in my situation to talk to..[/COLOR]

    #2
    Hi Ashley and welcome

    Sorry to learn that you are in "limboland", and are dealing with the frustrations of waiting and wondering. It's certainly not a pleasant place to be in.

    At first glance, it would seem like you meet the criteria for a diagnosis of MS ~ brain lesions and positive lumbar puncture. But it looks like your neuro wants to be sure, and needs more evidence.

    This is the criteria needed for an MS diagnosis, from the National MS Society:

    In order to make a diagnosis of MS, the physician must:

    Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

    Find evidence that the damage occurred at different points in time AND

    Rule out all other possible diagnoses.

    The Revised McDonald Criteria, published In 2017 by the International Panel on the Diagnosis of Multiple Sclerosis, include specific guidelines for using MRI and cerebrospinal fluid analysis to speed the diagnostic process.

    The MRI can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms ó referred to as clinically-isolated syndrome (CIS).

    The MRI can also be used to confirm that damage has occurred at two different points in time. In some circumstances, the presence of oligoclonal bands in a person's cerebrospinal fluid analysis can be used instead of dissemination in time to confirm the MS diagnosis.


    If you think it would help, could you get a second opinion, perhaps from a neuro who specializes in MS?

    I wish I could be more helpful!

    Again, sorry that you have to go through the frustrations of waiting for a diagnosis. Two years is a long time.

    If you have any questions, just ask and we'll be glad to help if we can.

    Feel free to share how you are doing and what is going on in your life.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      I can kind of relate to your storyÖ



      My only issue I ever had was double vision which started last September the 18th. I went to the hospital on the 21st had an MRI and the ER doctor came in and said you have this. Over the next 4 days I was tested for almost everything (except B12 deficiency which I was told was not a ďreal thingĒ Ė meaning it causing lesions not the deficiency itself).

      I had a lumbar puncture about a month later since they kept pushing back the day they told me they were going to do it to keep me in the hospital longer. It came back positive for bands. My old neurologists then said it was confirmed that I had what they had originally had told me and started me on a medicine.



      I was like you with wondering how this could be. No one in my family has this and I was extremely healthy. (Smoking was my only bad habit but it helped with stress) I have access to my MRI report and have spent many nights googling every single line and lesion locations and what it means for me. My second MRI showed nothing new or no changes. I have had no new symptoms and I feel like my vision has even improved. (I went back to my old glasses because my new ones were giving me a headache and making things blurry.)



      So I kind of feel like my story is like yours but with an opposite ending. I was told you have this and it could be nothing else. I can relate 100% to your fear of losing vision. I am a surgical technician at a vet clinic and vision is kind of important when you are assisting with surgery. So yes I can understand where you are coming from.

      I am just really curious now as to why I was told after one MRI that this is what you have and it can be nothing else and you are having issues with them giving you a diagnosis. I know different doctors do things different but in this case this is 100% opposite outcomes.



      I hope you get some answers soonÖ It is really frustrating to have to wait on them when it is about something that can have an impact on your future.

      Comment


        #4
        Hey and welcome, ashley.

        I spent a while in limbo myself... not exactly fun. If you decide you want some real-time chat, go ahead and join in. Be nice to see you there.

        Comment


          #5
          Hi Ashley and welcome,

          I have a friend who had optic neuritis which left her with a little residual damage, then a full 10 years later, she had it again. The second time, her vision returned to what it was prior to the attack. She didn't get her diagnosis until then.

          I would seek a 2nd opinion if that is an option. If not done with the brain MRI, also ask for a cerical spine MRI since MS is suspected. If you do have lesions there, it would satisfy the disemination in space criteria.

          Absent a diagnosis, one other thing to ask your neurologist: do you meet the definition of clinically isolated syndrome(CIS)? This is used when MS is suspected based on a single event, but clinical diagnosis can't be made. In CIS, there are studies that show treatment with a DMT can prolong time til a 2nd relapse and help prevent early damage. Some of the MS meds are used to treat CIS.

          Lesion location, number, size and age at MRIcould be one reason why someone in the same scenario may get two different results. Brain lesions tend to be in specific areas, and in some cases, specific patterns for MS.

          I wish you the best.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Originally posted by pennstater View Post

            I would seek a 2nd opinion if that is an option. If not done with the brain MRI, also ask for a cerical spine MRI since MS is suspected. If you do have lesions there, it would satisfy the disemination in space criteria.

            Absent a diagnosis, one other thing to ask your neurologist: do you meet the definition of clinically isolated syndrome(CIS)? This is used when MS is suspected based on a single event, but clinical diagnosis can't be made. In CIS, there are studies that show treatment with a DMT can prolong time til a 2nd relapse and help prevent early damage. Some of the MS meds are used to treat CIS.

            Lesion location, number, size and age at MRIcould be one reason why someone in the same scenario may get two different results. Brain lesions tend to be in specific areas, and in some cases, specific patterns for MS.
            I totally agree with getting a second opinion. I was diagnosed shortly after my first (known) attack of double vision (INO) and positive lumbar puncture. My dr was very proactive and got me on a DMD as soon as he could. Time from attack to treatment with DMD was 6 months. I have been on Tecfidera since and my MRIs and disease have been stable with no relapses for the last 5 1/2 years.

            Studies show, as mentioned above that early treatment can delay disability progression, so personally, I would not be comfortable with a dr taking a "wait and see approach" for me.

            I am extremely thankful for my dr. taking the initiative to do a peer review of my case with MS Specialists and for encouraging me to get a second opinion.

            I totally understand the fear of losing your vision. I only have one "good" eye to begin with. My left eye is a lazy eye with an underdeveloped optic nerve so my right has become my dominant eye and no amount of vision correction can help my left eye at this point. When I got the double vision, I thought it was my left eye that was giving me problems, but I totally freaked out when my eye dr told me it was the nerve in my RIGHT eye that was paralyzed and causing the double vision.

            I was sent to the ER and was admitted overnight because they thought I might be having a stroke. I was awake all night, crying and on the phone with my mom in the family lounge. I found a window to sit by around dawn that morning and watched the sun come up, wondering how many more sun rises I might be able to see. So I understand that fear--I've lived it too. My vision has resolved to about 95%--when I am overly tired, it seems to stress my left eye more than it used to, but I am still able to drive and function as well as I did prior to the attack.

            The first year after diagnosis, instead of taking it easy, I went full-steam ahead with doing and seeing as much as I could in the fear of "what if." A lot of people refer to that time as the "lost year"

            But after that, things started calming down. Like I said, here I am over 5 years later and I'm still working full-time and I was just promoted to supervisor a few months ago. A large part of my job now is reading, reviewing and editing the work of others, so my eyesight is also important to my job.

            Again, I just want to encourage you to be proactive and push for a second opinion from an MS Specialist if possible or at least a neuro who has a large MS patient population.

            We're here to talk, whenever you need it!

            Comment

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