#we - Shift.ms

@Bibi0420

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I just feel that I can’t cope with all my pain in this f body what I have! Under the weather a little! Off work A long time! Just would like my life back! :(

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@hectorpinojr

🙏🏾 WE'RE EXCITED! 🙏🏾

Hello, although we don't know each other, today I want to ask you a small favor that means a lot to our family and for me as a father with Multiple Sclerosis Primary Progressive. My son is participating in a competition, and every vote counts. 💙 If you have a moment, could you support him with yo...

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@junee

Heat sensitivity and ms webinar

This heat has been rough and saw this event pop up so wanted to share in case anyone else is interested. Its in july https://www.eventbrite.co.uk/e/heat-sensitivity-and-ms-webinar-lwuk-tickets-1976572014102

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@PhilipT

Well another day at again

Well it takes a new medication and hopefully it makes me stronger faster and better looking. Is it to much to ask for rich? Lol

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@RikF86

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Lesion count - how many have we all got?

Hi first post - very recently diagnosed consultants comments whilst in hospital were ‘I think this has been going on for a very long time’ at the time I didn’t know what, now I do. Neurologist confined diagnosis and gave me a count of 23 in my brain with one active and 3 in my spine with one active...

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@calm_life521

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So, anyone here on how well they deal with hot vs cold weather and how well they handle it?

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@mooseman

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Not sure if it is related but no matter how often I eat I always feel mildly hungry. It is as if my perception of satiation is simply not present. I am not gaining weight because I make sure to not overeat but I am simply always hungry.

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2

@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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@sheerwater

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First week on Mavenclad.

I started my first course of Mavenclad last Friday. Naturally I feel very nervous, and since starting the medication I feel absolutely wiped out with some body shakes every now and then. Just wondering, for those of you on Mavenclad, what were your first weeks like? Did your symptoms improve?

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5

@AdiLaw

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What ice cold 🧊 treat should be eaten during this hot weather? I have a sweet tooth but at the same time I'm looking for healthy treats with natural sweetness.

I don't want to trigger a type 2 diabetes side effect. Google says: High sugar consumption 🍦🥤🧋🧃🧉can worsen multiple sclerosis (MS) symptoms and accelerate disease progression. Diets high in refined sugars promote systemic inflammation, trigger severe energy crashes that exacerbate MS-related fa...

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