Hi, i am new here been going through all sorts of symptoms for the past 6 years, optic neuritis twice, numbness, weakness, trigeminal neuralgia, the list is endless i’ve had 5 MRI scans starting from 2018 and every year they came back normal along with blood tests lumbar punctures etc etc everything normal that was until my most recent MRI scan in august last year which finally showed the optic neuritis (4 years after it last happened!) so i’ve gone from neurologist saying MS to nope deffo not MS as it would have shown by now to hmmm we still aren’t sure maybe it could still be MS. it’s been a long 6 years and i’m so done with not having answers… i got real sick in september which i absolutely would call a relapse it lasted 3 months i thought i was dying! anyway a new symptom that arrived was muscle twitching and it still hasn’t stopped… it’s everywhere i feel like my body is bubbling does anyone else have this?
Hi Roisin92x
A dx of MS can take a long time as many on here can confirm; and the ‘yes - no - maybe’ until the definite dx arrives.
I don’t have any all over/everwhere symptoms, but I do get a buzzing sensation in my left foot/leg (bit like having a phone on vibrate) when I’ve been overdoing things - or generally over-tired which can be quite intense. I also get sudden largish twitches (left leg) usually when I’m trying to relax/rest up.
Write to your Neurologist’s office and let them know about the bubbling sensation, when it began, the intensity, does it ease up at any times of day etc. ask them to keep the letter on file.
I have experience the muscle twitching in my sleep it’s woken me and my husband has noticed this, arms and legs. Do tell your Neurologist of the symptoms, I wrote down all my symptoms for each appointment. I empathise with your journey, I’ve just got my diagnosis after 7 years of my initial scan, like many others.
Hello @Roisin92x
For me, the lumber puncture was the underliner with parenthesis --MSers have high T-Cells in their spinal fluid, which indicates multiple sclerosis.
Even if it’s not MS, you may have one of other debilitating conditions, just as serious; I hope you find your diagnosis soon so that you get treatment for it asap.
Best regards,
JP