“Searching for answers—has anyone had this experience before diagnosis?”
Hi everyone,
I’m currently in the diagnostic process, and I’m hoping to connect with others who might relate. I’ve had a long list of symptoms over the years that don’t seem to fit neatly under one umbrella, but MS has come up more than once. Some of my symptoms include:
• A spinning, buzzing, or electric sensation in my head, neck, and spine
• A sensation of pressure behind my eye and in my skull
• Loss of smell (anosmia) since 2019
• Bowel and bladder incontinence
• Cognitive fog, memory trouble, and difficulty expressing myself
• Weakness, coordination issues, falls, and foot dragging
• Buzzing or quivering feeling throughout my body
• Scalp feels like it’s sliding or being pulled
• Fatigue and emotional ups/downs that feel neurological in origin
I recently had an online neurology consult. She said it sounds like migraine and prescribed Nortriptyline. That left me feeling pretty deflated—but she did order brain/spine MRIs and blood work, so I’m grateful for that at least. I’ve also sent a letter to a trusted neurologist out of state and am waiting on a referral at an MS Center.
I’m still trying to stay open-minded in case it’s not MS—but everything in me says this is something systemic and neurological. It’s not just my head—it’s my whole body.
If you’re someone who went through a long diagnosis journey or heard “migraine/anxiety” early on, I’d love to hear your story. Just trying to stay grounded while I wait for answers.
Thank you so much for reading.
– Andrea
From my first MS symptoms to diagnosis was about 10 years. I have chronic migraines and every time I sought medical care I was either told migraines or anxiety. Even after I finally got an MRI of my brain in 2022 after the left side of my body went numb I was told by a neurologist that the 7 lesions that were found were “normal” even though the radiologist’s report said “evidence of demylinating disease”. Fortunately my primary care doctor at the time was a fierce advocate and made sure I got into an MS specialist. I had a lot of the same symptoms as you. I’m sorry you are going through this and hope you get answers soon.