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Changed diagnosis - is this common?

I was diagnosed about 3 weeks ago with PPMS - and I have been to the hospital today to see another Neurologist who has changed it to Secondary Progressive. He said that DMT’s wouldn’t be appropriate but he does want me to have a lumbar puncture. I have quite a few other orthopaedic issues which are confusing things a bit. Can I ask has anyone else had something similar happen to them but also, is the lumbar puncture absolutely necessary do people think? I’m a scardey cat I have had a colonoscopy in the past would that be comparable does anyone know. Many thanks

Juniperl

Hello

I think a change from SP to PP or vice versa is fairly common, maybe more so in the case of a change from RR/SP to PPMS, because they do appear to follow different disease patterns.

The use of lumbar puncture tends to be most useful in diagnosis of PPMS, although a positive LP is used as part of the evidence for all types of MS.

The reason a change of diagnosis is more commonly made from the RR/SP type to PP is that in relapsing remitting MS, and therefore secondary progressive too, there are more inflammatory attacks (ie relapses). This makes the diagnosis usually slightly easier than for PP. In primary progressive, there may be one or more inflammatory attacks, but quite often there are none at all. This is why an LP is useful in diagnosis of PPMS.

Do you recall having relapses, or episodes that may now retrospectively be considered relapses?

Ultimately, there may be little difference in the two diagnoses, it’s not that one diagnosis is ‘worse’ than the other; the symptoms are often pretty similar. In PPMS, there may be more spinal than brain lesions.

With regard to how essential the LP is, if your MS can be shown to have ‘dissemination in space and time’ (lesions that appear in different areas and are either lesions of different ages, or evidence of previous relapses), then the LP doesn’t add much value really. If it can’t be seen to have this dissemination in space and time, the presence of Oligoclonal bands in the CSF are quite important for diagnosis, which is why it’s so useful for PPMS.

An LP is quite different to a colonoscopy. (For one thing, it involves different regions of the body!) The lumbar puncture involves a tiny needle being inserted into your spine under a local anaesthetic to remove a small amount of cerebrospinal fluid. It doesn’t hurt, but it can feel rather strange. Just the thought of someone sticking a needle into your spine makes many people feel a bit squirmy!

The most important thing to remember about having an LP is to stay laying flat for as long as possible after the test - at least an hour. People are usually recommended to drink lots of caffeinated drinks, eg full strength coke (through a straw as you’re laying down). Both the coke and the staying flat are to reduce the likelihood of a terrible headache. Some people don’t have the benefit of this advice and are fine (I didn’t know this and was fine), other people are unlucky and get the headache from hell anyway.

If your MS diagnosis is already made and is a firm diagnosis, you, shouldn’t ‘need’ to have the LP. So theoretically you can refuse to have it. But it’s quite hard to say no to doctors, so you might find your new neurologist wants to do it for perfectly valid reasons and you end up having the test.

Basically, it’s not an overly invasive, risky or painful test (so long as you stay laying flat after it). So having it perhaps isn’t a bad thing.

Sue

Thank you Sue, that is so helpful.

I had an LP it was fine. The thought was worse then the actuality of it.

Is there any treatment for SPMS? If not i wouldnt bother. why put yourself through the stress of it.

My neuro isnt using a LP now as he said its too invasive and can just muddy the waters. He is using the VEP more which is less invasive if there are doubts. The LP was fine by the way it was the blood test you have to have as well which hurt like hell and i nearly kicked the guy doing it. He took it from my vein on my hand, was brutal. My blood test showed inflammation, so this made my LP result negative for MS, but it was full of O bands.

anyway the LP is not bad like sue said you must lay still afterwards. I never got a headache, but it took over a week to recover from it.

If i had the diagnosis and it wont make a difference i.e. in treatment i wouldnt bother lol.

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There are no disease modifying drugs available for SPMS at present. But if you started having relapses, you could be re-labelled again as Progressive Relapsing, for which you can be prescribed Extavia (a form of beta interferon 1a). It’s entirely possible if you are diagnosed with the sub-type of MS RR/SP as opposed to PP, to start having relapses. They are virtually seen as different diseases because the inflammatory aspect just isn’t there in Primary Progressive.

Regardless of this, once diagnosed with MS, having an LP isn’t really necessary. But as I said, it’s hard to refuse a doctor who wants you to have one!

Sue

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Thanks both really appreciate it. I feel right down in the dumps today after yesterday’s appointment. Like most people on here I desperately miss my old life , friends are dropping off and although my husband has been such a great support I’m so worried about bringing him down. Sorry. Thanks for listening.