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Waiting for diagnosis

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    Waiting for diagnosis

    Hi all, apologies in advance for the long post ...
    My journey started two years ago, although i had some weird things before that. About March 2021 I had been waking in the morning feeling like utter crap for several weeks, with a headache and elevated heart rate. One morning my husband suggested the ER, and i accepted. I told them what I was experiencing, and the ER doc ordered a brain CT.

    After that, and after it was read by a radiologist, he came back in and said there was something unusual and an MRI was being recommended. The doctor said that rarely happens in the ER, so he ordered an MRI. Long story short, I had assymetrical ventricles and multiple white matter lesions. I went to a neurologist and had to wait about the longest month of my life for the appointment. I saw a PA in neurology, and I read only good things about him online. He specialized in MS and migraines. During the appointment, he put me through my paces, literally. Had me walk around different ways and touch my nose, etc. I had emailed my symptom list ahead, and he thanked me for that, but he didn't discuss it or the brain images with me. He diagnosed me with migraines of various types and put me on a preventative, Emgality.

    I felt relieved, although a little skeptical, but I had a diagnosis. I believe I do have migraines, and the Emgality helped. Eventually, he left practice to go into research and I found a new neurologist, an MD. We had our first visit, but for some reason I didn't think to bring the disk of the scans to her. ( She works in a different hospital system) FF 6 months to a couple weeks ago for my follow-up and I brought the disk. She looked at it and asked me if anyone had ever talked to me about it. She showed me the images and said there were way more lesions than she expected to see from migraines alone, and also in different places of the brain. She was also concerned about my assymetrical ventricles and especially the larger one. She said I need another MRI. She said if it's not migraine, it's MS, but her intent wasn't to scare me. I told her it did not, and I want to know what's wrong.

    Now, I'm waiting until May 17 for the MRI. I had never told her about all my past weird things and all my pain issues because I just chalked them up to aging (I'm 47). I have had my general doctor sort of blow off some of my stuff, so I've kept it to myself, thinking maybe everyone has random shooting pains in their limbs, and are exhausted in the afternoons, and they just suck it up and I'm being a weenie, etc. So, yesterday, I sent my new doc the list I made two years ago with some updates.

    I still have a fear of being perceived as Chicken Little, but I hope her concern warrants me thinking there is something really wrong with me. I'm not sure why I am posting this, except for maybe some advice. Am I handling this correctly, and was anyone else told their problem was migraines before getting their real diagnosis? And does anyone have any input on the ventricle situation?
    Thanks for your time reading this post.

    I'll post my symptom list as I shared with my doctor. She did reply and said really the MRI is what will decide where we go next.

    Sensation of dropping as if in an elevator or roller coaster. Happened one time while just sitting on the couch. Years ago.

    Forgetfulness about something that just happened Example: Poured myself a cup of coffee, went to sit down and there was coffee there already that I didn't remember getting. Never did remember it. Similar episodes are becoming more frequent.

    Sudden, semi-intense electrical shock like pain in right leg lasting several seconds. Leg was painful and difficult to walk on the rest of the day (approx summer of 2019) Have experienced less intense sensations in same leg since then. (Same leg currently experiencing pain and weakness)

    Felt like eyes weren't working together or focusing together, momentarily.
    A gray curtain dropped down and obscured part of my vision, momentarily.

    Loss of sensation/partial numbness in forehead. 4/11/2021

    Difficulty getting correct eyeglasses prescription. 2020

    Experienced extreme dizziness, where I felt like an invisible force was pulling me to one side, could not walk or function for several minutes. Had to lay down.

    Somewhat frequently:
    Restless legs and allover restless feeling like I need to stretch when trying to fall sleep or being otherwise still. No dietary or medicinal cause. (This has improved somewhat since being prescribed ropinirole and gabapentin.) Also at times I feel like I have a barely perceptible tremble/tremor. Can't see anything, just a sensation.
    Feel mentally foggy. Difficulty mentally organizing tasks and often get distracted and forget what I am doing.

    ​Frequent or constant:
    Lightheaded, spacey feeling.
    Feeling of pressure in my head, not pain, just pressure and difficulty thinking.
    Frequent urination, especially at night, seems improved by ropinirole.
    Constipation. Many years. And I recently seemed to have developed not always feeling the urge, but if I try, I can go.
    Ringing in the ears. Constant since about January 2021. Never stops.
    Stiffness and soreness. Feel like I am 80 when I stand up.​

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
    Last edited by KoKo; 04-26-2023, 07:30 PM.

    Hope you get some answers jenfromtenn
    Most of us have a lot of the symptoms you described so we know what it’s like. I think you are in good company here. For sure keep us posted. I have the migraine's also that come while sleeping. And wake feeling like I’ve been run over by a bulldozer. It’s hard to give much advice because we’re not doctors but so far it seems like you are on top of things
    Good luck. May -7th will be here before you know it.
    It was one agains't 2.5million toughest one we ever fought.


      Thank you, oceanpride, for the reply. I have come to understand that having to wait a few weeks for an MRI isn't uncommon and I'm sure the time will fly if I keep busy. Meanwhile, I'll keep reading posts etc on here.

      Also, just wanted to clarify that what they saw on the CT was, as I understand, the ventricle enlargement and thought there may be a tumor blocking csf from leaving the brain and hence the MRI was ordered. That proved not to be the case, but it did help bring the lesions to light, so to speak. I feel very fortunate that that happened, because it sounds like some have to struggle to get that first MRI. And I believe if I kept just mentioning symptoms to my GP it would take a very long time indeed to find out what my problem is.


        Hello Jen


        Wishing you some measure of peace and patience as you go through the process of finding a diagnosis.

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

        PPMS for 25 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~


          Glad your Neuro ordered the new MRI to compare. Years ago, I had headaches, MRI technology was new. They saw some lesions, but not really clear enough to delineate cause. They diagnosed situational migraines, as it was a stressful time in life. But when the situation resolved, the headaches did too. They followed me for a few years since I had a bout of vertigo, then stopped, chalking it up to stress and inner ear virus.

          13 years later, a relapse that led to diagnosis and conclusion the vertigo was actually MS. When newly diagnosed, I was hyper tuned into my body - which can be both good and bad. The general guideline is that if a symptom lasts 24-48 hours, it may be a relapse and definitely worth tracking. But that is a good question for your Neuro - what does she recommend tracking?

          I wish you the best of luck with your MRI and Neuro. Seems like you are in good hands with a proactive Neuro and you have already recognized the diagnosis process takes patience. Hopefully you can keep your stress levels down in the interim. Keep us in the loop.

          DX 01/06, currently on Tysabri