Feel like I'm going mad. Advice please

New diagnosis and before diagnosis
1

I have had severe fatigue for years along with recurrent water infections.

4yrs ago, I woke up with a spinning sensation that kept me house bound for months. Since this bout it has never fully left and have regular bouts that last for mths at a time.

i have seen an ENT specialist who performed a few tests which measured the pressure in my ears that came back normal.

i have had two MRI scans without contrast, which was normal.

i have a numbness tingling sensation in my right shoulder blade which is daily. My bowels go from one extreme to the other. Stabbing pains in ear always at night when I’m lying on that ear. Daily pain in the tight knee and a sensitivity yo bright lights. Back pain that starts at bottom and rises to the shoulders. Sciatica down the right leg.

should a contrast be used with an mri or does this not matter?

do my symptoms sound like MS? doctors have said all relevant tests have been done. Advice please…

2

Hi Marie,

Contrast does not matter. It’s only useful for distinguishing between active and historic lesions in people who do have lesions, but it doesn’t reveal any lesions that couldn’t be seen without - so if you don’t have lesions visible without contrast, you wouldn’t have any with it, either.

As to whether your symptoms “sound like” MS, that is probably one of the commonest questions we (diagnosed people) get asked, but one of the hardest to answer. Yes, in the sense your symptoms are all things a person with MS might get - there’s nothing that sounds really unlikely, or even impossible. And yet no, in the sense that over 100 conditions can cause similar symptoms. I’ve absolutely no way of knowing if your symptoms are related to MS, or one of the 100+ other things. As far as I know, MS has no unique symptoms that are never caused by anything else. If it did, diagnosis would be so much easier.

A clear MRI is not concrete proof you couldn’t possibly have MS (no test is), but in general, the longer you’ve had symptoms, the more likely it is something would show on MRI. In other words, it can’t “hide” forever - damage may evade detection in the early stages, but eventually, something would show.

So if you had the last MRI at least six months ago, it may be worth angling for another, just in case anything has changed. If, however, you had it more recently, it’s probably not worth pushing for another so soon - there has to be enough time to allow for changes. If you scan too closely in succession, you’ll just get the same result - except, occasionally, if there has been a major increase in symptoms, which could hint there would now be something to see!

Unfortunately, MS is notoriously difficult to diagnose, and is also a diagnosis of exclusion - which means it’s last on the list after every other explanation has been ruled out. This can make diagnosis extremely slow.

All I can tell you is that I do have a firm belief the truth will out - if you have MS, that is. I believe I’d been ill for years, before the chain of events that finally led to my diagnosis. I didn’t even feel surprised. It was more like: “So that’s what it was!”

Tina

x

3

Thank you for your reply.

i had an Mri 8 mths after this dizziness started. Then one again just over a year ago, which was paid for privately.

The vertigo and fatigue is by far the worst symptom. Comes on and never know when it’s gonna leave.

Im at the point where doctors are not looking into it any further. I get answers like dizziness is just something people just get.

I have a diagnosis of endometriosis and that was an 8 year battle to get a diagnosis for that.

how likely is it to have spinal lesions and no brain lesions?

has anyone had a few clear MRI scans before lesions show?

4

Hi again Marie,

There are some (rare) diseases considered to be related to MS that are characterised by lesions mainly in the spinal cord, with few or none in the brain. That would be very unusual for MS itself however. Although most people with MS do eventually have at least some spinal lesions, they are usually more common AND easier to detect in the brain, which is why brain MRIs are usually chosen as the more informative diagnostic tool.

Some people have had more than one clear scan before lesions show, but as I’ve already mentioned, the longer symptoms have persisted, the less likely this would happen. Even with relapsing remitting MS (the most common type), damage is cumulative - it doesn’t stay invisible for years and years. Something would eventually show.

Unfortunately, there are cases where no satisfactory explanation is ever found. This certainly does not mean the patient is delusional or fabricating. It just means that, at the moment, there are some things neither neurology nor psychiatry can explain. It doesn’t mean there’s no problem - just that we don’t have the tools to understand it yet.

Most of us go to the doctor assuming every problem has an answer. Unfortunately, there are still gaps in medicine, and things we don’t understand. I know that is not very comforting, but some patients wrongly think that if they don’t get a diagnosis, it means their symptoms are not believed. Sometimes symptoms ARE believed, but it’s still a mystery why the person’s having them.

Tina