#symptoms - Shift.ms

@Ritz

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May 2021: First episode of optic neuritis, diagnosed as Clinically Isolated Syndrome (CIS).May 2026: Second episode of optic neuritis, leading to a diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS).April 2026: Changed jobs, experiencing increased stress and long working hours.August 2026: Started Ocrelizumab (Ocrevus) DMT via injection.Current symptoms: Increased neuropathic pain and stiffness, along with a feeling of slight heaviness in my right arm.My concerns: Could these symptoms be related to MS activity, stress, or the effects of Ocrelizumab? How long does Ocrelizumab take to become effective, and should I be concerned about the worsening neuropathic pain and right-arm heaviness?

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@Beamiddy

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Weird stupid symptoms

I’ve broken the top of my foot, but can’t really feel anything, but the end of my thumb is screaming like there’s a pin under my nail even though it’s fine. I feel like I’ve got a uti, but I haven’t. I’m so tired, and I have to do my Kesimpta tonight. Generally feeling really fed up and just need a ...

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@nkinley

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I was diagnosed with RRMS over 10 years ago, but only recently started experiencing what seem to be flares and relapses. I’m meeting with a neuroimmunologist tomorrow and would appreciate hearing from others who have been through something similar.Was anyone initially misdiagnosed or told their MRI findings were unclear? My MRI only shows a few white matter lesions/scars, and I also have a history of Traumatic Brain Injury, which makes it difficult to know which symptoms are coming from MS versus TBI.Some of the symptoms I’m experiencing include:• Blurry vision, double vision, impaired color vision, and eye pain• Muscle weakness, stiffness, balance problems, dizziness, tremors, and difficulty walking• Numbness, tingling, heat intolerance, and possible Lhermitte’s sign• Brain fog, memory issues, concentration difficulties, depression, and mood changes• Bladder urgency and bowel issuesFor those with RRMS:Were you ever misdiagnosed before receiving a definitive MS diagnosis?Did your MRI show only a few lesions initially?What questions do you wish you had asked your neurologist early on?Which treatments have helped you most with fatigue, brain fog, mobility issues, vision problems, or relapses?Have any affordable medications or infusion therapies worked well with insurance coverage?Thank you for sharing your experiences and insights. I’m still learning how to navigate this journey and appreciate any advice.Questions I’d ask your neurologist tomorrowDo I meet the current diagnostic criteria for RRMS, or is further testing needed?Could any of my symptoms be related to my TBI, migraines, vascular changes, or another neurological condition rather than MS?Do my MRI findings show active inflammation, old lesions, or evidence of progression?Should I have MRI scans of my cervical and thoracic spine if they haven’t been done recently?Would a spinal tap (lumbar puncture) or additional testing help confirm the diagnosis?How can we tell whether what I’m experienced recently are true relapses versus symptom fluctuations?Am I a candidate for a disease-modifying therapy (DMT), and if so, which one do you recommend and why?What are the risks, benefits, and expected effectiveness of oral medications versus infusion therapies?What can be done specifically for fatigue, brain fog, pain, bladder issues, vision symptoms, and mobility problems?Given my family history, TBI history, and concern about possible CADASIL, are there additional tests you recommend?Common MS Treatments to Ask AboutDisease-modifying therapies (to reduce future relapses and new lesions) often include:Oral medicationsTecfideraVumerityAubagioMavencladInfusion therapiesOcrevusBriumviTysabriKesimpta (monthly self-injection rather than infusion)Many insurance plans cover these, and manufacturers often have copay assistance programs. Your neurologist’s office typically has staff who help obtain prior authorizations and financial assistance.One thing I’d specifically tell the neuroimmunologistBring up:Your history of MS diagnosis 10+ years agoRecent worsening symptomsHistory of TBI and cerebral contusionCognitive changes and memory issuesVision symptomsFamily history of stroke/CADASIL concernsAny heat intolerance and bladder symptomsThose details may help them determine whether there is one diagnosis explaining everything or whether multiple conditions are contributing to your symptoms.I’ll hoping tomorrow’s appointment gives me some clear answers and a concrete treatment plan. A neuroimmunologist is exactly the kind of specialist who can help sort through complicated situations like MS and my other neurological conditions.

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@Caitlin

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Symptoms

Has anyone experienced random bouts of vertigo since starting medication? Also, I’ve just had my 7th dose of Kesimpta on Thursday and feel like I’ve had a huge energy crash out. I’ve tolerated every dose well up until now. Has anyone else experienced this?

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@Johnbradley

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