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Advice on what to say to neuro?

Hi folks! I’m supposed to call the neuro’s secretary this week to tell her how I got on with my steroids (5 days of Methylprednisolone @ 500mg, three weeks ago) and I’m really not sure what to say.

I was dx’d last month but the neuro wasn’t sure what type of MS I have so gave me the steroids in case I was just going through a very long relapse (I’ve been unwell for 8 years now (4 with a dx of ME)), on the basis that if I started to improve, DMDs could be considered. The thing is, apart from feeling really unwell when I was taking them (extreme fatigue and feeling very spaced out), the only difference is that I now have ‘the buzzies’ in my right hand, which I’ve never had before and started while I was taking the steroids.

I’m tempted to say they made some improvement just so I can try them (DMDs) as how can they tell whether I just have very mild MS as opposed to progressive? Also, if it is progressive, is it a good sign that he didn’t want me to have a LP i.e. can you have a dx of PP without a LP (recent report said I had lesions (T2 FLAIR?) in right parietal lobe and left post central gyrus on first MRI and now have additional ones in left and right frontal lobes, left and right parietal lobes and ‘a single high T2 and high FLAIR signal to the right within the brainstem posteriorly’)?

Really not sure what to do…

Mags xx

It’s always best to tell the truth, but I’d definitely be challenging any decision that is based on whether or not you respond to steroids. Yes, progressive MS does not tend to respond as well to steroids as RRMS, but steroids do not work as well if taken later in a relapse and, even if taken early, they do not work for everyone, irrespective of their type of MS. They also stay in your system for many weeks, so even if things have not changed much for the better now, there is still time for things to improve.

Also, steroids have nothing to do with whether or not you would be eligible for DMDs. The criteria are at least two clinically significant relapses in two years, over 18 and able to walk 100m.

The criteria for diagnosing PPMS are:

  1. One year of disease progression (retrospectively or prospectively determined = looking back or judging how things will develop)
  2. Plus 2 of the 3 following criteria:
    A. Evidence for Dissemination in Space (DIS) in the brain based on 1 T2 lesions in at least 1 area characteristic for MS (periventricular, juxtacortical, or infratentorial)
    B. Evidence for DIS in the spinal cord based on 2 T2 lesions in the cord
    C. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index) = positive LP

(T2 refers to the type of MRI scan.)

Have you had your spine scanned? If you haven’t, or if you have and there were no lesions, then you cannot meet the criteria without a positive LP. If you have and there were at least two lesions, then yes, you can be diagnosed as PPMS without an LP, but you would have to have a history of symptom progression.

Hth!

Karen x

Hi Karen, thank you so much for your reply. I’m finding this all very puzzling to be honest. I’m not sure if I meet the criteria for DMDs as as far as I’m aware I’ve never really had what I would think of as a significant relapse. I became ill very slowly, starting with fatigue, balance issues, flu-like symptoms, muscle pain etc which all gradually became worse and then other symptoms (tingling and buzzing in feet, bladder urgency & minor incontinence, occasional bowl incontinence, pain behind eyes, mobility etc) started appearing.

My neuro was going to send me for a LP last year (EVP were fine) but when I still hadn’t had an appt by March and I saw him, he decided to send me for a second MRI instead, (brain only, as was my first) and when he diagnosed me he said I wouldn’t need one.

Not really sure what to think now…

Mags xx

It doesn’t sound like RRMS tbh. I wonder what’s behind the neuro’s thinking? If he was confident that it was PPMS, then why talk about DMDs unless it was to get you onto a trial? If he wasn’t confident that it was PPMS, then why not do a spinal scan and/or an LP? Why this faffing about with steroids? Are your symptoms coming on and then just staying rather than getting worse? That would be the only way for there to be confusion that I can think of.

I think, if I were you, I would ask for a spinal scan and LP. If he says no, then at the very least you need a proper explanation of why he thinks they aren’t necessary (especially given the McDonald criteria that I posted above).

Saying that, I have a feeling that one of the reasons that he’s not sent you for a spinal scan is that some of your symptoms show that you have spinal lesions so that a scan is not necessary. If this is the case, he could diagnose you with whatever type of MS your history and symptom presentation fits with - without an LP too.

So it might be worth asking him how his thinking would change if you had an LP and it was negative. Would he still be 100% confident that it was MS?

Not sure this has been terribly clear - I’m kind of typing as my thoughts evolve!

Ultimately, I think that you need to do more than tell the secretary how the steroids have gone. I would ask:

  • I know I have multiple lesions in my brain, but the McDonald criteria state that I also need to have either two spinal lesions or a positive LP to be diagnosed with PPMS. So please can you tell me why I’ve not been sent for a spinal MRI and LP?

  • If I had an LP and it came back negative, would Dr X still be completely confident that I have MS?

  • Precisely why can Dr X not be sure what type of MS I have?

Karen x

Karen, you are such a treasure, thank you! I’ve got his email address now and will write to him this evening and include some of the questions that you have asked. My brain is in a bit of a muddle at the moment so they have really helped me to focus on the real issues and concerns that I have and I really appreciate your help and advice

Some of my symptoms seem to be fairly static (buzzing, fatigue, muscle pain, wobbly legs etc) while some seem to come and go (dizzyness, pain behind eyes etc).

I know I should be happy that I at least now have a dx after so long but I think it’s the feeling of not having any control that is doing my head in. At least if I knew what type it was, I would have more of an idea of what to expect and I can just deal with it and get on with my life.

Thanks again,

Mags xx