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Still searching for a diagnosis...

I started this journey in 2010 in my early 20s, when I noticed that I was having involuntary hand movements and numbness/tingling. Didn't take the visual disturbances as a symptom until the first neurologist asked about it. I had an MRI without contrast in 2010, nothing abnormal to note but no follow up with contrast. The doctor said he suspected early stage MS but without any evidence on my tests his recommendation was to follow up if I noticed any new or worsening symptoms. How vague.

Fast forward to December 2023. Suddenly hit with this feeling in my legs, like I was on a rocking boat or trying to walk down the aisle on a plane in turbulence. And it didn't go away. Since then, more and more symptoms are emerging, and looking back I recognize so many signs that I missed.

Now I'm waiting for my MRI, of course they are so booked that the first available appointment was three months out, and I have one month to go. It's frustrating. And I really want someone that I can talk to. I don't want to burden the people in my life without having an answer, and I feel lost at sea. My current neurologist said he suspects migraine disorder, without me experiencing migraine, headaches, auras, or any of the other classic symptoms other than visual issues.

I feel like I'm just venting at this point, but it's so important to have a safe place to share and speak freely about our experiences.

Hopefully the MRI next month will help give some definitive information. All I can do is keep recording my experiences and stay positive.

  1. Well you are certainly in the right place so vent away! We totally understand the many emotions you're experiencing right now. The process of getting a diagnosis can be frustrating to say the least and become tiresome. But you are doing everything you can to get you one step closer and that's what's most important. Continue to journal your symptoms and experiences and keep your head up. Staying positive will carry you through this journey. Soon you will have the answers to get you on the right path to relief. Control the controllable and allow everything else to be. We will figure this out together. Your in my thoughts, Latoya (Team Member)

    1. thank you for your kind words. Ever since my last bought of symptoms, which have been a real doozy and very persistent, I've realized that I need to give myself grace. That I need to forgive myself when I miss my goal or fall short with my tasks or the people I care about. That's honestly the hardest part. Trying to grant myself the permission to slow down, or postpone a responsibility.

      I started listing my symptoms at the beginning of my journal, and have filled two pages and started a third. And I read what other people are going through and all I want to do is try to give back to the world at large. Try to create some kind of beauty or compassion in the uncertainty of what is to come.

      30 days to go before my MRI, and then hopefully my doctor will see what I see and I won't have to fight to advocate for myself. I appreciate that I can be a part of this community despite my lack of answers. I appreciate everyone here, and have spent the whole weekend reading through the various posts and comments. Much love to all!

      1. I am getting in my own head something awful right now. I have 18 days to my MRI and keep imagining the various scenarios that could occur. From actually getting a diagnosis to being written off. It's wracking me with anxiety (which of course makes my symptoms even worse!) and I'm losing sleep over it all. I burst into tears today for no reason at all, I wasn't even sad until I was.

        So I'm trying to find the silver lining, something to take away. And I come to this: my life has touched so many people, I have had amazing experiences and known wonderful people, and I have found a partner that knows and understands me and truly loves me, even if I am broken. I will take all of my blessings and lean on them to get me through what I am feeling right now. Much love to you all!

      2. I truly hope you find peace and assurance in this! Those are blessings that will carry you greatly over the next few days! We're rooting for you. Much love back to you! -Latoya (Team Member)

    2. My anxiety is causing all of my symptoms to be worse daily. I'm not loving it. But I am wondering, can anyone tell me (on average) how long it takes for the MRI results? And how are the results conveyed? Just an update on my chart to read, a phone call, a request for a follow up appointment?

      I'm giving myself grace and allowing myself to fall short without calling myself a failure. I've started singing horribly at the top of my lungs in the car so no one has to hear to let out the emotion without crying.

      Much love and respect to all!

      1. I thank you both! I have received my MRI results, and unfortunately am no closer to a diagnosis. And worse, my neurologist didn't even want to do follow up tests or a follow up appointment. So I had to request everything, and have an appointment set for two months from now but no tests scheduled until after the appointment (maybe).

        I've battled anxiety my entire life, my first real anxiety attack happened when I was 12 at school on the first day in a new school getting ready to go to lunch and I worked myself up so much that I whited out (white tunnel of static doom) and down I went, which made it worse.

        My usual coping was to walk. Hard. Fast. With a purpose. And right now, that's not going to work for me, so I'm finding other ways. These days mainly every time I feel the anxiety creeping in I make the decision to give. Whether to a friend or someone I have never met or anyone in between. If I can get a smile, I feel better. I've started carrying candy in my pocket every day, and will randomly hand it to a person and tell them what I appreciate about them. And before they can respond I walk (stumble) away. That's all I got right now. Hopefully my next appointment is more... proactive.

      2. thanks for the update. That's great news that your MRI came back clear. I'm sure it feels a little disappointing at the same time though because while you're not wanting a diagnosis, you also want answers and some validation for the symptoms that you're experiencing. I'm glad to hear that you were a strong advocate for yourself in getting another appointment to discuss it further. If it helps, imagine us as an invisible army with you on these appointments encouraging you along your journey. We certainly understand all too well, the changing road to a diagnosis.

        I also admire your decision to focus on giving when you feel anxious. It's such a beautiful way to shift the focus off of the stressors and find joy and/or gratitude in the moment. I don't know if you've ever read Cami Walkers book "29 Gifts" but it sounds like you might enjoy it. It's a fantastic book and was even part of Oprah's book club many years ago.
        Best
        Alene, Moderator

    3. it really is a mixed blessing. I'm happy that my brain currently has no damage. But I'm devastated that my neurologist really doesn't seem interested in further testing. I know that what I'm experiencing isn't just in my head, it's not just stress, it's not just me pushing myself too hard. And all I really want at this moment is to get all the tests, check all the boxes, and see where I end up. If MS is my path, I want to know now so that we can start treatments and start planning for a potentially altered future than I envisioned. I just didn't want to have to fight for it.

      I think that you are amazing, and I love seeing your responses. Not just to me, but to all the people making posts on here. You take the time and energy to spread the positive too, and it's individuals like you that make our world a better place. 💜

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