#neuroimmunology - Shift.ms

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More Coronavirus (Covid-19) Advice re DMTs

The Cambridge neuroimmunology group led by Prof Coles has published downloadable guidance regarding DMTs here: https://t.co/kdrZTC1K5r?amp=1

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@jona

Exciting Insider News my befriended neurologist researcher shared with me.

Faculty of Medicine University of Zurich post: Can we train the immune system to stop attacking itself without shutting it down entirely? Researchers from the University of Zurich and collaborating institutions have developed a novel cell therapy for multiple sclerosis, a disease in which the immu...

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@JenniDawn

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Hey everyone. I am new here. I was just diagnosed with MS after they found three lesions in my MRIs—one in my brain stem last April and two more on my brain about two months ago. Following a lumbar puncture two weeks ago, my neurologist confirmed the diagnosis.I have my first appointment with a neuroimmunologist MS specialist this coming Friday. I’m trying to put together a list of questions, but honestly, I’m an emotional mess and feeling very overwhelmed. I have a small list started, but I would love some suggestions on what I should prioritize asking as I start this journey. Please and thank you!😊

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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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@CesJo

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I was diagnosed with MS at Christmas. Med advise?

I was diagnosed with MS on December 19 and took a 5 day course of steroids in the hospital. I have an actual consult with a neuroimmunologist next week. Finding an available specialist proved to be difficult which has added to the stress and anxiety of the diagnosis! She intends to start DMTs fo...

Georgetown, United States

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More Coronavirus (Covid-19) Advice re DMTs

Exciting Insider News my befriended neurologist researcher shared with me.

I was diagnosed with MS at Christmas. Med advise?

Looking for
something specific?