#family - Shift.ms

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Family

What can you do when your loved one's fail to understand you.. but you still try even though you're battling a war within yourself and tired as it is..

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@mollyb

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Family

Anybody elses family struggle to understand? I'm 16 and my parents haven't been the same since I was diagnosed.

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@Fiachrac

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So i have ms and just soldiering on with it but my family seems to walk on eggshells with me and treat me like I cant do anything myself. How did people here tell them to back off without hurting their feelings. I know they mean well but its getting a bit annoying being treated as somebody that cant...

Kilbaha, Ireland

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@Deborah_Krupa

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Family

Just found out one of my aunts has MS on dad side. Does this raise the chances that I might have it ?

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@Jjjjjj

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Is anyone else the only person in their family w Ms?

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@ashia2013

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Family History/Genetics

Just wondering how many of you have a family history of Multiple Sclerosis like we do in my family. My big sister was first diagnosed with MS, then myself in 2011, followed by my big brother in 2021. Sadly we all watched the disease take my Mum in 2023 which was utterly terrifying. My twin has Lupus...

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@Randyadams

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Then went back on Sunday the 13 went back by ambulance and was in the hospital till Thursday. I was in the hospital for 5 days. I was really sick. And I wasn't well. I missed you all. Nobody probably missed me and thats ok. I came back home Thursday. Good to be home. Missed everyone. How is everyone. I hope well. Me getting sick was ms related. . Had my infusion today. And im real weak. Onto of everything my caregiver is leaving today (Saturday) to go see his family all day. And leaving me alone so I'll have nobody to look after me. So if I have a emergency I will be all alone. So pray my ms or heart won't act up. I pray. Not much I can do about itill have no company. Im use to being alone. Take care you all.

Jurupa Valley, United States

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7

@YogaLady

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Family situation

Has anyone had a time that you didn’t speak to your family or a family member for a long time!!!!? You feel like something is stopping you inside you? feels like it’s your Ms brain? I don’t get along with my Ms dad!!! Hope I’m not all alone with this one!

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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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@Erin29

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Problems with family

Does anyone else have issues with family pushing them to far with their MS. I have a niece who is 3 and my mom expects me to help with her and entertain her. The problem is my niece is feral and no one disciplines her. She’s allowed to kick, hit, and jump on me. I am the one expected to take her out...

First posted on the Shift.ms app

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