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New diagnosis, and navigating NHS

My wife (30) was diagnosed with MS several weeks ago, following a serious case of optic neuritis, and an MRI. I am now learning everything I can about MS, and am grateful to have found this forum.

My first priority, at the moment, is getting access to a lumbar puncture at the NHS—we don’t have private insurance, and of course now there is no way to purchase it. So I am learning everything I can about navigating the NHS (I have only been in the UK for a few years). Does anyone have advice on getting access to a LP in a timely fashion, getting access to treatment more generally (for example, if you feel your neurologist isn’t very good), and, if you were diagnosed around age 30, advice on living with this?

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What does she want an LP for? If your wife has a diagnosis already, she doesn’t need one. Sorry if you have a particular reason that I have not understood.

A neurologist does not have to be a world-famous Prof to arrange DMDs. Everything’s taking longer than usual at the moment, but it’s the same everywhere. And the NHS neurologist is always the route to DMDs and that should be your main priority, I think. I am sorry about your wife’s dx.

Without wishing to sound unhelpful,

  1. Alison is right - you have a diagnosis
  2. LP is another diagnosis tool, not a form, of treatment.

MS is a very slow-burning condition, taking decades to unfold, hence the consultants take a long time to diagnose and develop treatments, in conjunction with their team of Nurses in support. Most treatments rely on the measurement of differential results (now to previous) and if you put the time interval too close together, you may not achieve a meaningful differential result. It can be very frustrating.

At risk of sounding hypocritical, I recently challenged my treatment plan and did indeed bring about an acceleration of my programme. This was managed because I researched my own case and identified some things I felt they had missed. To their credit, they changed course and I am now getting the things I asked for. It was necessary to use some thinly veiled threats (they are scared stiff of being sued for negligence) but could not be done without you becoming very knowledgeable about your subject.

In the first instance, talk with your MS Nurse(s). Perhaps they’ve just not explained properly what you should expect?

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Can i ask you why you want her to have a LP?

You say she is diagnosed with MS. I would leave it at that IMHO. I had a LP all it did was muddy the waters.

My neurologist has virtually phased them out now. He uses a VEP test especially if ON has been present over time which mine had. I had one VEP in 2007 was positive bilaterally, and one in 2016 which was worse so that is why i was diagnosed with Progressive MS.

there are some great YOUTUBE stuff on VEPS.

To get a LP it would have to be recommended by your wifes neurologist they normally set these tests up.

Personally if i had a diagnosis i would not want a LP ever again lol.

I remember the lumbar puncture (almost 25 years ago) as a pretty horrible experience. As everyone else has said, with a definite diagnosis of MS, the LP is unnecessary. If however, her diagnosis is less certain, then the neurologist would surely want her to have the LP.

Best of luck.

Sue

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