#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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5

@scanman17

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Ms diagnosis

Finally got the diagnosis. Progressive MS. Starting Ocrevus next month. Anyone have any experience with this drug?

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5

@Krisssyyy26

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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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14

@k89

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Telling my teens about diagnosis

Hi, I was diagnosed officially in June but investigations began last summer when I was off sick from work for 6 weeks. My teenage kids know about some of my symptoms but I have always downplayed how much they effect me to protect them from worrying. I haven’t told family or friends about my diagnosi...

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27

@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?

Total answers: 186

46

@joydoris

The symptoms vary a lot person to person, and they can come and go. That’s why diagnosis often involves MRI scans, nerve tests, and ruling out other causes.

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@AbigailF

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Awaiting diagnosis

I was hospitalised back in July as I lost the ability to walk due to servere pain in both my knees. Nobody believed my pain as there was no swelling of bruising and my symptoms were 'weird'. It wasn't until I was in the MRI I realised the nurses voice change tone and I knew they had found something...

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2

@Prosperous225

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Diagnosis

So almost 10 yrs ago I was diagnosed with bells palsy but after going to my primary they informed me that it was ms what am I to do this was almost 10 yrs ago of not knowing I had ms

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2

@lulagm2001

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1yr from Diagnosis today

Today marks one year from my diagnosis. I have a lot of mixed feelings and definitely emotional. I have since only disclosed to a handful of coworkers my best friend and my immediate family. I have wanted to shout it to the world but at the same time I don’t feel ready. I have had 2 infusions and fe...

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3

@Flores_Doramis_Jr_

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Diagnosis

How old Where are you when you were diagnosed me 12

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25

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