#multip - Shift.ms

@etigger

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Have anybody heard of the HSCT? or the US Stem Cell Therapy for Multiple Sclerosis?

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8

@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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4

@Orely

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Multiple sclerosis in the movies

I really like watching movies and I started thinking about movies with characters that have MS. There’s a new one called “Take my Hand” and I wonder if anyone has seen it? I’ve seen documentaries like When I Walk, When we Walk, MS Hope, The Selma Blair documentary… But not a lot of dramas. I remem...

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9

@Ashlees0777

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This week has been a lot, and I’m definitely feeling it, but I wanted to share a little update.Between running my massage business, which I love, and multiple doctor’s appointments, I’ve been pushed in ways I didn’t expect. My MRI was tough and brought on a panic attack, but I got through it. The good news is that overall, everything looked great aside from some known issues in my neck, and I’m so thankful for that.After a lot of prayer and thought, I’ve decided to move forward with a new treatment plan. It’s a step toward getting back to feeling like myself again.I’m tired, but I’m hopeful. Taking it one day at a time and trusting the process.

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1

@HappyLady42

Multiple sclerosis

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@BiggKenn

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Hey everyone, I’m Bigg Kenn. I was diagnosed with Multiple Sclerosis a couple weeks ago after going to the doctor for vision loss in my right eye caused by optic neuritis. It’s been a scary and emotional adjustment, and after about 2 weeks my vision has only slightly improved. I’m still learning about MS and what this journey looks like for me, so I joined this app looking for support, advice, and connection with people who understand what this feels like. 🙏🏾

First posted on the Shift.ms app

30

@YogaLady

Multiple sclerosis T-Shirt

My Multiple sclerosis T-shirt arrived today of Amazon 😁🧡shame I can’t post it on here to show you all ☺️

Braunton, United Kingdom

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@Srushti

Join me to spread multiple sclerosis awareness!❤️

https://www.instagram.com/msandchai?igsh=MXUzdGJxNHgweWJvbg== I have started my page to spread awareness about multiple sclerosis. Do follow and share my work. It would be really appreciated. Given below is the link to my YouTube channel. Please subscribe and show some love. Thank you 💕 https://...

First posted on the Shift.ms app