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Letter from Neuro and LP results???

So my neuro’s secretary rang me today to say she had faxed my results to my GP. I was straight round to my doc and she saw me imediately (even though she had about 7 people waiting).

This is what it said…This womans recent lumbar puncture revealed normal basic constituents but positive oligoclonal bands. This would obviously be in keeping with a diagnosis of multiple sclerosis. With regards treatment options, I will see her in Daisy Hill albeit this may take some time.

I know it’s crazy but I was worried sick the results would be negative. So other than that what should I make from this?

Lindsay x

Hi Lindsay,

I would say that’s a diagnosis!

I don’t think they’d be discussing “treatment options” if you weren’t diagnosed with anything, as it’s rare, if not impossible in this country, to proceed to treatment if you weren’t diagnosed.

So congratulations and/or commiserations.

It is normal, though, for the diagnosis to be discussed with you in person, so I’m still not sure whether this is “official”, until you’ve had the chat.

Check insurance policies immediately, in case there’s a possibility of claiming.

Some of them have a strict time limit from the date of diagnosis, so there would be no harm giving them a quick heads-up to warn of an impending claim, even if there might be a wait to have it signed and sealed.

You obviously weren’t imagining things, and they have found something!

If it does turn out to be a v. long wait for the neuro appt, there should be absolutely no reason, in the meantime, your GP can’t prescribe symptom relief (if she hasn’t already).

DMDs need the neuro’s say-so, but symptomatic relief shouldn’t, although some GPs need a good kicking before they’ll do anything without the neuro signing it in triplicate.

Tina

x

Hello,

Could I ask if you’ve had an MRI too and what those results were? I’m in the position of having severe ON and some numbness but a clear MRI.

Hope you don’t mind me asking

Sue

Thanks Tina, I think I will wait till I see the neuro but it does look like thats where this is heading. I know both my husband and I have been hounding the hospital for results do thats prob why it was done like this. Sue, of course I don’t mind. I had a brain and neck mri. Brain was clear but had a lesion on my spine at c4. I have had at least 3 episodes since this time last year and lots of things in my medical history that suggests ms. my father also has ms. Hope this helps x

Hi Lindsay

Well it would appear that you are going to be diagnosed. As someone who has recently been diagnosed I know the sorts of emotions you must be going through - including relief that you are not going mad and imagining things.

My LP results showed positive oligoclonal bands (following negative evoked potentials and an MRI which was consistent with MS but inconclusive). It was the LP that really clinched the diagnosis along with clinical examinations of course.

I saw the Neurology Registrar but found his letter ambiguous. Luckily he had already referred me to the MS Nurse so I secured her help in clarifying exactly what it meant.

As your letter does seem to suggest a diagnosis is in the pipeline you might enlist your GP’s help to secure an appointment with the MS Nurse who can advise on symptom management and help you understand the condition and the next steps. And as Tina suggests, your GP herself may be able to offer symptomatic relief.

I hope you get the answers and the treatment you need very soon.

Hilaryx

Hi Lindsay,

It’s strange, I feel like I could have written your post!

My Dad has MS, my first (and for over 18 months my only) lesion was at C3/4 and I had positive oligoclonal bands too. Even with this though my neuro didn’t diagnose MS, he diagnosed Recurrent Myelitis. It wasn’t until I pressed for another brain scan, which revealed a couple of lesions, that I was diagnosed a few weeks ago.

If like me you feel like a diagnosis of MS is inevitable and almost a relief, I hope that your next appointment has a positive outcome for you and you can get started with treatment.

Best wishes

Lynn

It certainly does sound like a diagnosis will be coming your way - so congratulations and commiserations.

What else should you make from this? Not a lot really - I’m afraid it is all a bit of an anticlimax, after the wait. I guess that an appointment to see the neuro will be arriving at some point. The fax mentions treatment, so it would probably be sensible to check out the msdecisions website so you are ready (it will speed things up if you have already decided). You could maybe ask your GP to write to the neuro asking for the contact details of your MS nurse, so there is someone you can call, if you need to. Other than that, it is business as usual really - top priority: having a brilliant Christmas!

Karen x

Thanks for all your replies.

Now I know the results were positive do you think I should wait for an app with my neuro (which will prob take months) or should I pay to see him sooner?

I don’t know if he is going to make a diagnosis but if he did would I need DMD’s. I have had 3 maybe 4 episodes since this time last year.

Thanks

You might be lucky and get a cancellation - worth asking at this time of year when people are busy with other things / away etc. If there aren’t any and you don’t want to wait, a private appointment is about £150-200 I think.

If he says it’s definitely RRMS and you’ve had multiple relapses in just one year, then he should offer you DMDs: the NICE criteria are two “clinically significant” relapses in two years.

Karen x

[quote=“babylove”]

Thanks for all your replies.

Now I know the results were positive do you think I should wait for an app with my neuro (which will prob take months) or should I pay to see him sooner?

I don’t know if he is going to make a diagnosis but if he did would I need DMD’s. I have had 3 maybe 4 episodes since this time last year.

Thanks

[/quote] IF you can afford it, and IF you’re sure he accepts private patients, I’d pay to see him sooner. BUT, assuming you want DMDs, and assuming you’re eligible, it doesn’t mean he’ll prescribe them on the spot. The diagnosis consultation is usually limited to just that - confirming the diagnosis - which a lot of us go there already expecting. They make the assumption that’s enough to process on its own (which it is, for most people), and don’t press you for a treatment decision on the spot. You’re more likely to be handed a pile of bumf, and told to go away and have a think about it, and await a further summons back to the NHS (this is even if you have your diagnosis talk privately). Tina x