#numbne - Shift.ms

@nkinley

Last reply

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.

First posted on the Shift.ms app

4

@MSMommaof2

Last reply

Numbness

Me & my neurologist are pretty confident that I have permanent numbness in my hand. Does anyone else have this and if so how are we dealing with it? It’s my right hand (thank goodness not my dominant hand) but annoying none the less. Some days it’s terrible and others it’s not.?

First posted on the Shift.ms app

3

@msandpcd

Last reply

Numbness/tingling/electrical

Hey newly diagnosed, I have been suffering with numbness/tingling/electrical feeling in my left hand on 2 fingers, running down towards my wrist for about 3 weeks. It is horrible! It started in my foot but went away. Is this normal for relapsing remitting MS?

First posted on the Shift.ms app

31

@show

EditedLast reply

Does anyone or has anyone developed speech problems and numbness in the hands and legs ?

First posted on the Shift.ms app

23

@Platty

Last reply

Numbness

My fingers on my left hand went white coz ov numbness but then I lookd down and my middle and ring finger were black at the tip from my knuckle . But about 5 mins they went normal colour as the numbness wore off after being numb for about 15 minutes

2

@Lulabella

Last reply

Numbness anyone?

Hi guys, how's everyone doing?? I've started with a new symptom and thought I'd share. See if anyone else has it. So I've got PRMS as I've mentioned in previous posts, which casts it's evil way on my right side. Which Is less responsive, drags me around in circles blah, blah, blah. Anyhoo, the new t...

Beverley, UK

1

@Glamluvs5H8MS

Last reply

Numbness in waist and different parts of my legs and knees?

Is the numbness daily in my lower parts knees toes buttocks, a normal thing with PPMS or is this a sign of something else going on. It’s been a few days of as soon as I’m up and standing a numbness/tingly feeling happens in my legs, hips and buttocks. The feeling is always fleeting but not quick eno...

First posted on the Shift.ms app

2

@NykkiBenz

Last reply

Tingling and numbness in the feet 🙄😭

I need help, but I’m new. I was recently diagnosed in December 2025. I don’t start my DMT (Tecfidera) until this week coming and am still waiting for the next one to be approved. Anywho, my feet have just started to go numb and it’s more of a nuisance. This is me reaching out to those who have been ...

First posted on the Shift.ms app

17

@taesham

EditedLast reply

Left sided back pain , numbness etc.

Last night I started to experience pain all on my left side of my upper body . There was throbbing aches from my hand through my arm to my mid back . It was like in waves . My hands seems more numb and weaker. Is this normal ? Should I got to the ER?

First posted on the Shift.ms app

8

@chloess10

Last reply

Hand massagers to help numbness/tingling

Hi all Does anyone know if hand massager machines help numb and tingling hands? Thanks

First posted on the Shift.ms app

10

Looking forsomething specific?

Topics

Looking for
something specific?