Not yet diagnosed and frustrated

New diagnosis and before diagnosis
1

Hi all,

Looking for advice on getting a diagnosis of MS.

2 years ago I had sudden onset of left leg weakness where my leg would give way walking downhill or downstairs, quickly followed by a nasty episode of vertigo, tingling in my left foot and leg and left sided pressure headaches. My headaches resolved after getting a new prescription for glasses and actually wearing them (never used to) but for 2 years the tingling in my left side has been daily and spreads to my left arm and left side of my face. I’ve had an MRI on my brain mid 2024 which came back clear apart from scattered t2 subcortical hyperintensities which the neurologist deemed incidental. But since then my symptoms have only got worse. Every few months I go through 1-4 weeks of muscle pains, spasms and cramping on my left side and back, unbelievable exhaustion from doing very little, dizziness, inability to fully empty my bladder, my leg giving out and my body feeling like it’s full of concrete when I try to take the dog on a walk longer than 20 minutes, I can barely climb 2 flights of stairs without needing to sit down or fall down! I get horrible electric shock like pains in my leg, both arms and hands. Most recently when sat at my desk at work, both legs went completely numb! I couldn’t walk properly because my left leg just felt like it wasn’t doing what my brain was telling it.

I’m fairly confident this is early MS and that my spine is more affected due to the limb and bladder issues but my GP, the A&E doctor and neurologist all keep telling me MS is unlikely but can’t tell me what’s causing the problems if it’s not MS.

I’m 35 and for a few weeks every couple of months I feel like I’m 85! The trouble I seem to have is every time I get an appointment with a doctor, I’m not having a ‘bad day’ and the only symptom I have is the tingling. They can’t see any evidence of weakness or numbness etc so it looks like I’m fine, if only they could see what a bad week is like for me!

My neurologist has ordered another brain MRI and spinal MRI this time and in a way I hope to god it shows something but if not I’m afraid they’ll tell me just to live with whatever is going on without ever knowing what is happening to me!

Sorry for the very long post, I just wonder if anyone else has had these symptoms and been confirmed as MS or if anyone else has had the same problems getting diagnosed, I guess I’m just looking for hope that the doctors may eventually take this seriously despite ‘not finding anything wrong’ on the day of the appointment.

Kim x

2

Hi @KimF3615 , sorry and my sympathies for all the issues you are experiencing. I’m absolutely no medic but from what I know about MS and my experience of MS , symptoms don’t come and go every couple of months. Once you have a symptom that’s it. You might have bad days but symptoms don’t go and in my experiences most certainly not with any regularity.

I guess you just have to wait for the results of the MRIs - if these come back clear then I really , really doubt that you will get a diagnosis of MS - lesions are the key indicators and evidence of MS.

Maybe get X ray or CT scan to see if there is any spine problems- compressed discs?

3

Thank you @Hank_Dogs for your reply. Reading back through my post I realise I should have written it better. My symptoms don’t disappear in between each flare up, they come and go every day but they’re mainly manageable but I do find there are periods through the year where all of the symptoms get worse and I have everything at the same time, that’s mainly what made me suspect ms because they get significantly worse aIt’s never a complete lack of symptoms, I just feel as though the symptoms I have can’t be seen and worry the neurologist is dismissing them because they’re not obvious on my appointment. I know the only sure thing will be my MRI results but I just wondered if anyone else in their early stages of diagnosis had the same issue that the neurologist couldn’t find anything physical but it was on one of their better days.

4

Hi again, when I was first diagnosed I had absolutely no physical’ symptoms as in no weakness etc. My initial symptom was more or less complete loss of vision in my right eye. An examination of the back of the eye showed an inflamed/ enlarged optic nerve where it entered the eye and it was this that led to referral for an MRI. The MRI scan showed ‘quite a few ‘ lesions in my brain ( I’ve never asked what quite a few means !).

I wouldn’t worry at all about your physical symptoms not being evident when you see the neurologist or GP. Your neurologist is obviously concerned enough to get you an MRI and it will be the results of that , perhaps with a spinal tap/ lumbar puncture that will determine the diagnosis