Hi Everyone. I have a question

New diagnosis and before diagnosis
1

Hi Everyone.

A bit about myself. I am 55 years old woman and have had several things go wrong with my body over the years, so much so that I’m thinking of donating it to science.

I’ve ended up on this website from a journey that started in ENT. My hearing has diminished on one side with bi-lateral tinnitus and I was sent for a brain MRI to see if it was due to an acoustic neuroma. A couple of days after the MRI I was called by my consultant’s secretary asking me to come in first thing the next morning to discuss what was found. A sleepless night followed and I was greeted by the words “we found no signs of tumours”. Great I thought, until he said “but…” It turns out that I have signs of demyelination and was told it could have started years ago and not to worry but that I’m to be referred to a neurologist. I then asked, if it was years ago, why it hadn’t been picked up by the previous brain MRI that I had four years ago for my trigeminal neuralgia. He then checked my records, and sure enough it was picked up then as well but no-one mentioned it or followed it up? The ENT consultant said he wouldn’t answer any of my questions and that I needed to see the neurologist and that it will take a couple of months plus to get an appointment.

When I got home I did what I usually do and googled. I’m one of those people who do not like being in the dark and after my trigeminal neuralgia, I’ve made a point of being well informed (as I got more information about it from people who had or had had the disease). But every way I worded the search it still kept coming back to Multiple Sclerosis. So here I am. Asking you experts and I mean that in a most respectful way.

My daughter has said for years that she thought I had ms but I’ve always shunned her diagnosis. Nevertheless, while reading various accounts about the disease/condition, I’ve thought about past incidents I’ve had; severe vertigo last year that lasted over three months (gone now), my trigeminal neuralgia (fixed with brain surgery), numbness in my thigh, losing the feeling/movement in my left arm about 10 years ago (movement fixed now due to cervical disc replacement but left with minimal feeling in my arm and almost continual crawling down my spine from the cervical area), my continual fatigue (I’ve always put the cause as lack of exercise due to arthritis) and lately (last few years on and off) I’ve been having what the Dr’s are calling ocular migraines (kaleidoscope patterning which starts very small and eventually affects the whole of my vision), which last anything from 20 mins to an hour, leaving me with very achy eyes (no headache attached though).

I guess what I’m really asking is:

Is there any other reason other than Multiple Sclerosis for the demyelination? I do realise that you won’t have all the answers but I’m wondering if any of you had demyelination and got a different diagnosis to Multiple Sclerosis or similar?

I have just looked at the amount I’ve written. I do apologise but thank you if you’ve got this far.

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Hello, Purrfik, and welcome.

To try to cut straight to the chase, I think MS is by far the commonest cause of demyelination, but there are other, more obscure causes, which I can’t name - I’m just aware there are some.

Also, demyelination per se does not always lead to an MS diagnosis, because there has to be proof that it is either ongoing or recurring - not a single incident.

For reasons that are not clear, some people have just a single attack of demyelination. In some cases, this can lead to permanent symptoms, but does not mean they have MS, as the damage itself was a one-off.

With your symptom history, there would obviously be the suspicion that there have been multiple distinct episodes, BUT, they cannot accept the patient’s self-reported symptoms as clinical proof - at least two separate episodes have to have been confirmed by a neurologist - and, preferably, verified by MRI evidence.

Your MRI evidence shows you (probably) have demyelination, but not necessarily that it’s ever happened more than once. Hence, you still might not fit the MS checklist.

I do find it shocking - as I’m sure you do - that there was evidence of demyelination four years ago, and that it was even recorded, yet never followed up! You might want to speak to PALS (Patient Advice and Liaison Services) about that - the first port of call for complaints.

However, IF the current demyelination evidence is unchanged from what it was then, it’s unlikely to be sufficient to diagnose.

If, on the other hand, it’s clear there has been new demyelination between the two scans, it might be possible to diagnose, as you’d have clinical evidence of more than one episode.

I’m also shocked that you’ve undergone brain surgery, for what might turn out to have been a symptom of MS.

Surgery is not a usual treatment for MS symptoms, although it is occasionally done as a last resort, in very severe cases. So please understand I’m not saying for certain that you wouldn’t have needed surgery if they’d suspected MS. It could have happened that you would have needed it anyway - it’s not possible for me to say.

The “ocular migraines” sound exactly like ocular migraines to me - they run in my family, and I’ve had just one, which I never found the cause of - but your description sounds typical.

I’m diagnosed with MS, but not sure it has anything to do with my single episode of migraine, which was in the family anyway.

I believe some migraines can leave a form of scarring in the brain which could be confused with demyelination, so sorry to muddy the waters further, but that’s another line of enquiry.

I think and hope, that once you are in the right department (Neurology, rather than ENT), a lot more information will be forthcoming, but do be aware that ALL neurological problems can be quite challenging to diagnose, and, in the case of MS in particular, there is no “yes or no” test, so it still might take quite a while to confirm whether your MRI abnormalities definitely were demyelination, and, if so, whether there is enough evidence to say it is MS, or still “causes unkown”.

Sorry I (We!) can’t diagnose online for you - it’s pretty hard, even for experienced neurologists.

Tina

x

3

Thank you for the welcome and your comments Tina. They are most helpful.

I,too, am concerned about the findings of the previous MRI. Especially as, when the option of brain surgery to sort out the trigeminal neuralgia discussed, the MRI didn’t show any blood vessels affecting the trigeminal nerve and the surgery was to sever the nerve to alleviate the pain as I was on max dose of two of the main drugs used for TN. As it was, after the surgery, the consultant said that they found an artery and a vein irritating the nerve, and in one case it had nearly severed the nerve, explaining the pain I endured. But still, the demyelination should have been mentioned to me at the time.

I am not in any particular hurry to have a diagnosis of Multiple Sclerosis but I do like to be informed in what is happening to my body. I was very lucky to be diagnosed very quickly (within 4 weeks) of my trigeminal neuralgia and my GP at the time was more than happy for me to find out as much as I could and pass the information on to him and be referred to who I wanted to see.

This time is different as I’ve moved and I do not know what I should be asking for and do not know yet who my neurologist will be. Unfortunately patience has never been a strong point of mine but I guess now is a good time to learn/practise.

Sue x

4

Hi again.

I waited nearly four weeks and hadn’t had any notification of a neurology appointment so I rang the central booking and it turned out that the ENT secretary hadn’t referred me to them yet. They were very helpful and said they would chase it and ring me back, which they did. They said that they couldn’t make an appointment for me yet as the referral needed to be graded for urgency with one of the neurologists (later in the week) so they would ring me once that had been done. They rang back, as promised, saying that the neurologist wanted to see me this Thursday.

Now, what should I take with me, if anything? What is likely to happen? I am taking my friend with me as my memory is awful and I don’t want to miss anything they say. Actually getting nervous, which is ridiculous given that I’ve seen so many different consultants before with all my conditions.

GP says that it states demyelination in brain stem area.

Sue x