#diagnosis - Shift.ms

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Diagnosis Questioned

My neurologist appointment Monday was crazy!! A while back I had an MRI from orthopedics. It was in question because they identified another lesion. Monday my neurologist finally reviewed everything and said that it wasn't a lesion. They are unsure what it is but needed to know ASAP. She said that i...

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@Krisssyyy26

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Relapse after diagnosis

So I am starting a relapse after being diagnosed in Feb. I have only had one infusion in May and the bloodwork i had from my follow up at tge end of June has shown more nerve injury regardless of the infusion. They have put me on high oral dose steroids and pushing to get me in for MRIs but im scare...

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@witham35

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Twitching with pins and needles! Does it stop and how long? Recently diagnosis and these symptoms are not new just more persistent.

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@WPerrotto

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A comment I had made about earlier onset before diagnosis.

https://www.psychiatrist.com/news/ms-might-begin-a-decade-earlier-than-we-thought/

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@kirstiewalls1

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Hello everybody, is is normal to have a whirring in your head and a feeling g of pressure as if your head ants to explode all the time? I'm still waiting to see a neurologist for my diagnosis bit this is driving me mad all g with all the other horrible symptoms I'm experiencing.

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@CB1979

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MS diagnosis limbo.

Anyone else in the ms diagnosis limbo? Or watch and see what happens? 🙄

Rye, United Kingdom

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35

@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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@CameronS

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Shortly after diagnosis and Facebook

Did anyone else get diagnosed and join the Facebook page Multiple Sclerosis resources? That page gave me so much anxiety and even had me 😔 I deleted that page and now I dont see all the negative post or misinformation and I think my anxiety has dropped to a normal level. My point is , sometimes al...

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@bless1karl

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1 year since diagnosis

Coming up on one year since I got this life changing diagnosis. Everyone always asks me how I'm doing. I understand they are trying to be nice but I'm tired of always explaining what's going on. I feel like I'm living a "normal" life somedays and other days I feel like my life is forever going to be...

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@s_h_a_y

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How does the diagnosis process work from here?

I'm M 45 in the UK. My GP originally sent me for an MRI of my spine because of ongoing back issues; we all assumed it was a trapped nerve or a bulging disc. However, after the consultant radiologist reviewed the scans, I was referred to a Neurologist due to "areas of concern." At my NHS neurology ...

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