Now Super Confused.com - Limbo appears to Continue

New diagnosis and before diagnosis
1

Hi everyone,

Haven’t posted for a while as have had lots going on at home with kids etc…but have been reading. Not sure I have anything useful to offer at the moment as I thought I had MS, now again not sure…so don’t want to assume that I have a place here!

Following verbal diagnosis of MS by one Neuro Professor in October, I was passed to MS Specialist Centre and there began the confusion!!

MS Specialist kind of ‘suspended’ my diagnosis and said he wanted to rule out some more things. He ordered Anti MOG and Aquaporin 4 blood tests and repeat Brain/Spine MRI with contrast.

First MRI done in July after apparent ‘relapse’ led to hospital admission.

2 lesions found on spinal cord, one enhancing (active?) one older. Lumbar Puncture revealed Oligoconal Bands present in CSF only.

Symptoms improved following 3 day IV steroids.

Repeat MRI done 3 weeks ago shows no new lesions or activity - which I guess is good :slight_smile: Tests for Anti MOG and Aquaporin antibodies are both negative (As far as I can work out, a POSITIVE in these supports a diagnosis of Neuro Myelitis Optica, ADEM or possibly Transverse Myelitis.

So to summarise - 2 spinal cord lesions of different ages; A number of distinct periods of different symptoms in different parts of body over 20+ years; Positive for O Bands in CSF; negative for Lyme Disease, B12, Anti Mog and Aqua 4 negative.

And still only a letter now saying " I would not recommend any specific meds at this time but will review you in clinic in due course"

Symptoms fairly stable since summer hospitalisation, as in same parts of body but more noticeable and some days pretty troublesome. More than I would expect considering no new activity

So what on earth do I expect at next appt???

Will I be discharged, or ‘watch & wait’?? Or will I be diagnosed with something?? Could it be SPMS given that symptoms are intensifying but no new activity on scans?? That is my main concern.

I really am down today. I know the letter is GOOD as in no evidence of disease activity, but I feel worse than I did in the summer, with now apparently no confirmed reason why, therefore no treatment options :frowning:

Anyone have any thoughts?? Bing a cynic it did cross my mind that Neuro at MS centre has to wait for new financial year before he can confirm any more new MS’ers !!! :smiley: - being flippant there

2

Hello Minnie

To me, it looks like a duck and quacks like a duck, therefore, it’s probably MS!

As you’ve noticed, there was one enhancing lesions on your spine in July. Which means there was disease activity at least that recently. The newer MRI not showing any further activity doesn’t mean you zip straight into SPMS, it may just mean that RRMS is in a quiescent place at present.

The criteria for DMDs is all about ‘activity’, ie. relapses and new lesions. If you’re not experiencing either at the present time, it is quite tempting to think ‘ah I must have jumped straight over RR into SP’, but honestly that does you no favours.

Take my experience for example, I’ve now had MS for 22 years (lucky me), but have had a very chequered pattern of DMDs. So for most of that time I’ve not been on a disease modifying drug. Eventually a couple of years ago, my neurologist decided I must have transitioned to SP. Then last year, after years of no movement, I’ve had 2 relapses and two new small enhancing lesions. Which means I’m now recategorised as Progressive Relapsing. So now I could theoretically qualify once more for a DMD. But the only one that’s accepted by NICE for PR is Betaferon. (And I can’t take beta interferons. Plus, I’m too disabled to qualify really as well - but I’m leaving that for the neurologist to figure out.)

So it may seem that an enhancing lesion 6 months ago is ages ago, and therefore you’re probably progressive, but honestly, that’s not a particularly valid conclusion, neither is it very helpful.

When you keep in mind that relapses can completely or partially remit, so it is fairly normal to have ongoing symptoms after having had (albeit undiagnosed) RRMS for some time. Any disease activity can and will have left damage behind it.

I suggest you keep a relatively open mind about your diagnosis. Start keeping a diary (if you haven’t already) and get sorted in your mind what outcome you want from the next appointment. You may need to come right out and ask the question, ‘is it MS?’ And,assuming the answer is ‘yes’, ask ‘is it relapsing remitting?’ If the answer to that is either ‘yes’, or ‘probably/possibly’, then ask for a disease modifying drug (if you want one). The criteria for a DMD is confirmed MS and that the disease is ‘active’. That normally would correspond to 2 relapses within the last two years (which is where the diary comes in handy).

And Minnie, even if you don’t get a diagnosis of MS, you have a place here for as long as it’s useful to you. Being investigated for possible MS is a lonely place to be. The forum members are really quite accepting, if you’ve been in a state of MS limbo, then you belong to the gang.

Sue

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Thankyou Sue, Wise words as always x To be honest I can’t see what it could be other than MS now.

Lyme Disease, Vitamin B12 etc all ruled out, NMO ruled out, ADEM ruled out etc etc.

He could say Transverse Myelitis but as far as I can make out that normally (but not always) results in symmetrical symptoms, which I don’t have!

I had kind of benched it until the letter came today,which obviously brought it all back to the front of my mind!

The worst bit is my emotions. In October I was told “you have MS” by one neuro and dealt with the emotions that provoked. In November, I was told by another Neuro “I’m not entirely sure it’s MS” . Another range of emotions!

Today, although I am very very glad that no new lesions or activity have occurred, it leaves me even less able to guess what he will say at my next review!!

Having 2 kids with Autism means I have developed into quite an orderly person over the years, and like to now what’s what! So if it looks like a duck, it should be a duck! Or if it doesn’t quite look like a duck, they shouldn’t have told me it was a duck!!!

I have a bar of Fruit & Nut in the fridge with my name on (literally - we have to in our house with greedy gannet teens), so I’m off to give it a bashing and have a read of my latest book, ‘Cactus’ which is rather good so far!

Thanks again for your comments x