#experience - Shift.ms

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Experience

The experience is good.

Manila, Philippines

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Do you guys experience this often

One thing about it is when that fstigue hits it feels like a truck fell on you then ontop of that feels like pins and needles in your body it is crazy how MS workd

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Has anyone gained experience with lions mane as a tincture? For cognitive help and energy? I enjoy the mushroom coffee but it’s so expensive, just saw this alternative and wondered if there was any real experience. I don’t trust marketing lol

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Overdid it last week and had an elevated heart issue but also had my ocrevus infusion, since I am rubbish, shaking and cannot walk far, my existing symptoms are elevated, has anyone else experienced this

Swansea, United Kingdom

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Hi, I'm fairly new to the community. I was diagnosed with MS in 2001. I've tried several "old school" treatments such as Copaxone, Betaseron and Rebif. I went off all meds around 2015 because I got tired of feeling the flu like symptoms. I suffered a pretty bad exacerbation in 2016 where I was hospitalized for 7 days while I completed steroid infusions. My MRI at that time showed new scars, one of which was on my cervical spine. The steroids did me well for several years. I didn't have any new symptoms until 2023. I've had several MRI's since, all of which show no new scars. My neurologist has refused to treat me with steroids because I don't have new scars. I told him I was open to infusion therapy and we decided on Rituximab. I will be starting my first infusion on Monday, July 20th. Does anyone have experience with this particular medication? If so, has it improved your symptoms and what can I expect as far as any side effects? Thank you in advance for any feedback.😊

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@MSMomStephanie

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Ok question lately I am experiencing stiff legs I ride my stationary bike everyday does anyone experienced the same and what happens?

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Travel insurance experiences and recommendations

Hi Has anyone in the UK had any 'interesting' experiences with travel insurance? I called my insurance provider yesterday to inform them of my MS diagnosis. After a lot of questions and being put on hold twice while they spoke to their supervisor, all seemed to be ok, and the existing policy was a...

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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 have 3 urinary tract infections over the course of 2 years does anyone with MS experience them

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I have a card for medical Marijuana. I was also smoking for a LONG time before my diagnosis. I am visiting people who don't approve and have not smoked for 2 days. I feel more unstable I my legs and overall balance. Does anyone else have an experience they are willing to share? Is my experience common?

First posted on the Shift.ms app