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Facing the unknown

12 months ago I hurt my back which recovered within 5 days by taking pain killers.

Approx 5 weeks after this I started getting a pins and needles sensation in my left leg.

My GP did blood and I had a low B12 so he gave me 3 weekly shots of B12 (this was never followed up again)

I was then sent to a physio who sent me for lower back scans, which all came back normal.

I then went for nerve conducting studies which again came back normal.

Therefore was sent to see a neurologist who referred me for upper spine scan and brain the scan.

The upper spine was fine but the brain scan showed legions on the white matter which he said strongly indicated MS.

He ordered more bloods and a lumbar puncture (I am still waiting for this)

Some bloods are back which show my B12 is now fine but I have a low ferritin level which is 7

I asked could it be anything other than MS and he said he was 90% sure it was MS.

He asked me about other conditions such as bladder control and I stated “if I need to go I need to go” but I have always put this and other general isssues such as slight memory issues down to the menopause (I am 50 year old).

I have had a problem with one eye for the last 5 years which was diagnosed as episcleritis and not related.

So I am now just in limbo as the neurologist doesnt want to see me again until January, surely he cant put into my head I have MS and then make me wait 3 months.

I’m not sure where to turn to.

Thanks for listening

Jo

Dear Jo,

Oh, my luv; limbo is the worst of MS; you know something is wrong but no learned person is prepared to give it a name.

Until you fulfil part of the Mc Donald Criteria, https://www.mstrust.org.uk/a-z/mcdonald-criteria

Is your eye problem like this optic neuritis - multiple sclerosis encyclopaedia

If so this means you do could adhere to the Mc Donald Criteria and should be diagnosed. Does your Neurologist know about you eye problem?

George

Hi Jo

It’s quite unusual for a neurologist to just throw the words ‘90% sure it’s MS’ at you unless they really do think it is. And it could be from the types and places where the lesions in your brain are situated that it seems fairly clear to him.

I suggest you phone the neurologists secretary and/or the appointments team at your hospital to find out when you are likely to have the lumbar puncture.

The LP is where they insert a small needle into your spine and withdraw a tiny amount of cerebrospinal fluid. This is then analysed. 95% of people with MS have what are called Oligoclonal bands present in their cerebrospinal fluid. If your LP is positive for O bands, chances are that the neurologist will then diagnose you formally with MS.

It’s possible that he’s given you a repeat appointment date of January because he knows there may be some delay between the date of the LP, him seeing the results and then reporting back to you. There would be no point in an appointment in November, (for eg) if he doesn’t have the LP results.

The other thing to know is that following your recent appointment, the neurologist will write to your GP with details of what was said to you in that appointment; you will be copied into that letter. This may make things a bit clearer for you. Again, if you speak to his secretary, you can find out if such a letter has been written (and if not, when will it be?) and when it’ll be sent out.

It sounds like it was quite a shock to you to be told this. Don’t expect to get over such a piece of news too quickly. And to be told you probably have something like MS is frightening. Have a look at https://www.mstrust.org.uk/a-z/diagnosis and maybe https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis I know you’re not actually diagnosed with MS, but the first link should make some of the tests a bit clearer for you and the second has a lot of information about MS and it’s emotional effect on you. There are lots of other useful pages on the MS Trust website as well as the MS Society of course.

And don’t be shy about coming on here and talking to us about how you’re feeling and what’s happening to you. There are lots of experienced members who will try to help you understand MS, as well as other people in similar positions to you.

Sue

Hi George

I have mentioned my eye problem on the 2 occasions I have seen him but he seems to dismiss it as if it is not relevant.

I have suffered with the episcleritis for approx 5 years now and every time I am referred to a specialist they too just dismiss it and say we don’t really know what causes it now.

My concern now is should I try to get referred back to the eye clinic and tell them about the possibility of MS or should I wait until I see the neurologist again

Thanks

Jo

Thank you Sue for your reply,

he definitely said about 90% sure its MS and I would be assigned a MS nurse specialist, but I still feel a bit in limbo with it all.

As I have said there are so many questions I have, like why has my problems with episcleritis been allowed to go on for 5 years without any further investigation.

I have also read things about low ferritin presenting with similar symptoms.

I think I may just be wishful thinking that it is something other than MS but until I get a firm diagnosis I don’t know what to think.

Jo

Hi George

No my eye problem isnt like the link you showed me.

It is the white of the eye goes red and inflamed and slighlty dry, this happens at least once a month

Jo