Impression: likely demyelination

[GLOBALBEES]

Received a call from my GP surgery this morning asking me to make an appointment with them as soon as possible.
I had a brain scan exactly a week ago and the doctor wants to discuss the findings
Opened the NHS app to see the MRI results and I've convinced myself I've got something awful wrong with me. The words that frightened me the most are in the title.

I get why you're stressed. I hope you've managed to make your appointment and get seen already. Hopefully they can put a plan together for you.

Waiting for results is horrible. I hope it's nothing major. I had a MRI for suspected brain tumour and remember how stressful that wait was.

What symptoms have you had. Hope you get an appointment soon.

I initially went to the doctors because my balance was getting really bad and progressively worse and could only walk on a very flat and even surface. I suspected it was something to do with my ears but the doctor ruled that out.

I have a Demyelinating polyneuropathy (CIDP) if there’s anything you want to ask I’m happy to respond here or by PM. I’ve had it for 14 years, am relatively stable and receive regular treatment. It’s not great but I’ve learned to cope. Dizziness and unsteadiness were my first symptoms.

Technique:

standard sequences through the brain

Report:

The ventricles are of normal size and configuration. The

craniocervical junction is normal. There are a number of foci of high

signal intensity change in the supratentorial white matter which are

predominantly in the periventricular space , which raises the

possibility of demyelination. There are no other intra-axial areas of

abnormal signal intensity or abnormal mass lesions seen within the

brain, brainstem or cerebellum. There is no focal or generalised

volume loss

Impression:

Likely demyelination.

Why did you initially receive a scan referral?

Because I'd lost my sense of balance. Was literally having to hold onto walls,railing,cars and sometimes people to say cross the road,walk down steps or anywhere that wasn't completely level. It happened over about a year but had a few wobbly episodes over the last 4 years. There's nothing wrong with my ears. Lots of other strange health problems prior to this; carpel tunnel syndrome, massive electric shock like pain down my spine ,cosrochondritis which was agony , extreme exhaustion, would last a few months and come back some time later or completely dissappear after a time. Double vision which meant I seldom could drive,saw optician who said I had healthy eyes. Very sluggish bowels, like my guts couldn't tell that I needed a poo and quiet a few accident ( thankfully no recent episodes, mortifying )
I suspected I had an auto immune disorder, but this was ruled out at the time and I seemed to see a different doctor at,each visit. A couple of years ago I had a flare up of gout and went to the out of hours clinic to get medication. The doctor I saw went through my records and was appalled at the level of testing that had been done,saying it wasn't even appropriate for the particular symptoms I was having at that time..
Luckily I have had no joint or intercostal problems for years,just loss of balance.

Well it does sound serious, OP, but with any luck it will be manageable once you start treatment.

Like @weegiemum DH had CIDP, where the D is for demyelinating. The first sign something was wrong was an acute loss of balance well over 20 years ago. He was walking to work and he practically crawled home. Off to A&E we went.

Also like @weegiemum he has been responding well to treatment ever since it was properly tweaked, over 20 years now. You wouldn’t know anything was wrong to look at him. He is accumulating minor neuromuscular deficits very slowly but still in great shape compared to most retired men. I think he will be hill walking in his 80s at this rate.

Another big demyelinating disease is MS. As scary as that sounds, there are fabulous treatments now. My friend who has it is very athletic. It isn’t such an uncommon disease, either - we probably all know people who have MS and there is nothing in the way they go about daily life to indicate this. Relatively few cases have the bad outcomes that give it a scary reputation.

In fact, a friend who is a GP said that in her practice the doctors once had an idle convo ‘if you had to have a generic case of a common, serious disease, which one would you pick?’ Most of them chose MS because it is now generally very treatable, whereas they stayed well away from diabetes as they find it less predictable and more likely to have knock on effects.

Of course there may be other conditions. The terrible diseases like motor neurone disease are not demyelinating.

I feel sure your medical team will be following up with you soon, but will also understand if you chase this. Take care.

It’s a very scary time OP, totally empathise I’ve been there. Mine turned out to be MS and like the above poster says, the treatments are incredible these days. I’ve had my diagnosis 22 years and have travelled the world, had a baby, had two stressful full time careers and plenty of fun and shenanigans along the way. If it’s MS you are lucky in a way because it’s common, highly researched, the health industry and pharma industry invest heavily in it and like PP said the treatments are amazing and always improving. I take a pill twice a day and that’s it.

It’s best to get as much info as possible and get the right treatment. You’re on the right track, whatever it is. Good luck.

Sounds very like MS. I have some of those symptoms. But it’s really not the end of the world if it is. The treatments are very effective. But you might have to push to get on the very strong ones.

Update. GP has told me to stop driving for now until the consultant is happy I'm safe to drive. GP did series tests, touch,blood pressure and asked about any other issues that were niggling me such as eyesight etc. Have been fast tracked to see neurologist within a month.

Not driving may be difficult, OP, but the fast track referral is excellent news. If you feel like chatting in the meantime, we are here.

BTW, DH still drives FWIW. His driving licence is reviewed every 3 years by his neurologist. No problems yet.

Comment
Advice and guidance response received
on ERS from Neurology logged with the iniital request
I would be grateful if you could review this 60-year-old lady at your earliest convenience.; She has been experiencing a variety of neurological symptoms over the past year, including intermittent blurred vision, diplopia, and episodes of dizziness. Given the persistence of these symptoms, an MRI brain scan was arranged.; The MRI report has demonstrated findings suggestive of demyelination. In view of her clinical presentation and imaging findings, we have advised her that further specialist assessment is required to investigate the underlying cause and to exclude conditions such as multiple sclerosis.; I would be grateful for your assessment and any recommendations regarding further investigations and management.; Thank you for your assistance.; Yours faithfull

I am sure that wasn’t easy to read, OP, but MS is probably the most common cause of demyelination.

Remember how treatable it, CIDP and other diseases are. Fast tracking sounds scary but it is basically good news, getting you the help you need asap.

Do you know anything about next steps?