#diagnosis - Shift.ms

@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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13

@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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12

@CameronS

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First appointment, New diagnosis

Diagnosed last week May 6th through the Er and being admitted. My first appointment is June 10th. Whats should I expect from my first visit?

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7

@CSDevon

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Diagnosis and DVLA (UK)

Hey guys and girls. My car insurance is due for renewal soon and I need to inform DVLA about my condition. I am worried of the outcome. I am not yet on any medication although hoping to start Kesimpta in next couple months. My condition doesn’t affect my daily life currently apart from foot dro...

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3

@shiftms-films

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Do All MSers Think The Same? | Diagnosis: Part One

Join Roxy, Heather, Maytee, Katt and Dave as they agree and disagree with hot MS topics, opinions and share their multiple sclerosis diagnosis stories. Did you have a difficult diagnosis? Why not share the lessons you learned with the Community in the comments below 👇 https://www.youtube.com/watc...

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@marycontrary

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Supporting brother with recent diagnosis

Hello, my beloved brother was recently diagnosed with MS and says that he wants to die because this is not a life worth living. I am desperate to help him. He lives far away from me. Besides texting and calling, and sending meals, how can I support him? Should I go to his house?

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3

@kellihr

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Well I got my face my face to face diagnosis today. When I started this journey a little over a month ago, I had no idea this is where I would be. My dr and I already talked through portal messaging and she told me everything came back as we discussed. So I’ve a had week or so to let it set in. Being told to my face was a lot different. So I am officially part of the PPMS club. Yay. She said it takes about a month to get approved by insurance for the Ocrevus. So now we wait to get my first infusion. This SUCKS!!!

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4

@shiftms-polls

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Poll 📊 Did your HCP mention progression at diagnosis?

Last month we reached out with an opinion check and asked you if healthcare professionals should discuss progression at diagnosis. While 17% of you said you’d prefer to be told later on, around 75% said yes, you would prefer to be told about progression at diagnosis. In the second of our progressi...

Are HCPs talking about progression at diagnosis?

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