#als - Shift.ms

Forum

We are a charity and rely on donations

Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

©2026 Shift.ms

Sort 4923 results by

Last reply

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.

First posted on the Shift.ms app

Last reply

Hello! I am being referred for a cognitive assessment. Just wondering if anyone has had that done. Also, what happens if you fail? I'm not really sure what to expect. Thanks

First posted on the Shift.ms app

Last reply

I am trying to understand how people with PPMS get treated with something other Ocrevus.I would also like to know how it's covered, insurance,out of pocket etc. Please comment so I have answers. Thank you

First posted on the Shift.ms app

Last reply

I have a card for medical Marijuana. I was also smoking for a LONG time before my diagnosis. I am visiting people who don't approve and have not smoked for 2 days. I feel more unstable I my legs and overall balance. Does anyone else have an experience they are willing to share? Is my experience common?

First posted on the Shift.ms app

Last reply

New Here : Hello all , I’m Miss Mary . I been diagnosed since 2011 , it’s been rough , but I’m making it. I work out everyday for an hour to keep me grounded I also implemented Nutrition meals . I start with slim fast shake with an apple and I have berries for lunch with dinner I have glazed salmon with fresh lemon to end meal

First posted on the Shift.ms app

EditedLast reply

I took my second loading dose of Kesimpta and the injection never clicked and went on very fast. Also bleeding and it hurt. Now a bruise. Not sure of some of med leaked out. I feel like the injector pen didn’t work the same as the first one. Has this happened to anyone else? Thanks.

First posted on the Shift.ms app

Last reply

Did anyone else get Marburg MS also known as fulfilment subtype MS? It is a aggressive subtype of RRMS and it’s very rare. I have never met anyone else that has had it!

First posted on the Shift.ms app

Last reply

I was recently diagnosed with PPMS and also have type 1 diabetes. Just wondering how MS affects my diabetes?

Point Pleasant, United States

First posted on the Shift.ms app

Last reply

Cladribine/Mavenclad Year 1. I took my first week or Y1 last week. I don't feel sick or have a headache today but I am absolutely exhausted. My bones feel tired and I'm moving around in slow motion. Did anyone experience this in the week after your first round? I'm working from home but it is taking a herculean strength of mind. I've had interferons and dopamine years ago, azathiapron for 8 years and then 4 months of Tysabri (until I had an allergic reaction). All this to say, this isnt my first treatment experience but this one seems to have wiped me out. Is it just me or are there any other kindred spirits out there? I'd be really grateful for any shared experience and also experience of managing work through treatment weeks.

First posted on the Shift.ms app

Last reply

Random crying? I was introducing my young cousins to the 80s movie, Monster Squad. I ended up having tears roll down and I felt… weird I guess? Crying while watching an 80s horror classic. Is that normal for anyone else? I also woke up a couple of days ago with Foot Drop.. conected in any way? TIA.

First posted on the Shift.ms app