#experience - Shift.ms

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Experience

The experience is good.

Manila, Philippines

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Hello everyone, it’s taken me some time to find the courage to write this post.Lately, I’ve been concerned about my health, and multiple sclerosis is something I’m worried I might be dealing with. I don’t have all the answers yet, and I’m still trying to understand what this could mean for my future.One thing I’ve realized is that uncertainty can be difficult. Sometimes, you have questions that nobody around you seems to understand, and you find yourself looking for people who have experienced similar challenges.That’s one of the reasons I’ve joined this community.I’d love to hear from people who have been through the process of getting diagnosed, those who remember the uncertainty of waiting for answers, and anyone who has found ways to stay hopeful through difficult times.

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Has anyone else with MS experienced something similar after quitting cannabis, especially if you used cannabis as part of your daily routine

Hey everyone, I’d love to hear from anyone in the community who has gone through something similar. Before quitting cannabis, I used to smoke weed regularly while making music, working on visual art, and getting into deep creative work. Over time, it definitely became a crutch for me — I relied on i...

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At certain times I get super Hot and feel like I can't do anything at all. Does anyone else experience this?

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@littleladybug1

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Looking to start Ocrevus soon. What is your experience?

My neurologist is looking to start me on Ocrevus soon. I was diagnosed with MS about six weeks ago. Today my neurologist and I discussed what DMT I am going to start. She wants me to start on Ocrevus IV infusion depending on approval from insurance which hopefully will happen within the next two wee...

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Does anyone else experience pain and throbbing in legs at night? It's only at night when I'm lying down and/ or ready for bed. It's different from my aches and pains and stiffness during the day. Was diagnosed in mid November so I'm still trying to navigate my way through all this nonsense 🙃😉🧠🫘( I call my lesions brain beans 🤷‍♀️😂)

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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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I get dibilitating vertigo on a regular basis. I can’t see and sometimes unable to walk - my legs do not work at all. Has anyone else experienced this?

Costa Mesa, United States

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Does anyone recommend a cruise line that accommodation wheelchair? Your personal experience not what Google recommends.... thank you

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Has anyone had difficulty with their walking? Do you experience lower back pain?

First posted on the Shift.ms app