#heatintolerance - Shift.ms

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Heat intolerance

Hi! How long does it typically take for the symptoms from heat intolerance to clear up after getting in to cooler temperatures… Spent the day outside yesterday, roughly 80 degrees, no humidity. Today feel like death. Maybe death would feel better. I’m exhausted, dizzy, can’t think of words, and ...

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@rachel_mi

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Ampyra for heat intolerance?

Hi team 🫶 I’ve been taking a look at possible medications for the heat intolerance; in my case, it's really bad, more than a normal MS person. I found the Ampyra medication to be a hope to improve that. Have you got any experience with it? Is it free on the UK or do we need to pay? Thank u xx

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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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@ashaustin

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Heat intolerance

What are some of yalls symptoms or indications that you have a heat intolerance??

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5

@sapphira

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heat intolerance

Does this sound mad? I’ve been suffering heat intolerance but I believe it stems from my brain…I often feel like my brain is hot. The heat intolerance is mainly from head and works its way down. Does anyone else’s brain feel like it’s on fire because I’m feeling like I’m going mad. Hope you are all...

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@Whitters23

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Heat intolerance

Hello fellow MSers! How do y'all deal with the heat? I've always LOVED the winter - cold amd dark lol - but Alberta, CAN, is going through another heat wave@ i keep cold, wet towels around my neck, but that only works for a bit. Any suggestions?

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@Angeldelight

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Heat intolerance

Like the most of you lovely people I get heat intolerance but does anyone find it doesn’t affect you if you are by the sea. I’m fine by the sea but different inland

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5

@k4l0n

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Heat intolerance

Do people find the heat intolerance is associated with new lesions or not? Or is it just something that once you have MS heat intolerance affects you for life?

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28

@Frankenflo

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Cold/Heat intolerance

I’ve been off the app for a while but I love a good hot vs cold deep dive. I HATE the cold with my entire being…autumn/winter is the absolute worst for me because it makes me feel like a literal slug, every movement is a chore and I nap like a hibernating bear but in the summer months there is a m...

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29

@Gladio

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Heat intolerance

Hi does anyone find a change in temperature annoys them in anyway. The temperature has got warmer and I am sweating buckets more tired than usual

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