#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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@Rochelle17

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Vacation with my family

My family is going to Puerto Rico for vacation this winter. I have SPMS and everything is difficult. I’m thinking of staying behind because everyone is doing something I’m unable to do. We did Disneyworld and kids and hubby had fun while I shopped since I couldn’t do rides. I have been to Disney man...

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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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@claudiamonique

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My family

it’s a little sad because my mother is an RN and she is clueless about what I’m going through. some days I just wanna stay in bed and cry myself back to sleep!! Sometimes my legs hurt my back hurt. And my neurologist usually says what MS doesn’t make you hurt

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@BrokenRoger

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