Lumbar puncture and tips for diagnosis process?

New diagnosis and before diagnosis
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Hi

After being diagnosed with chronic nerve pain and then experiencing some neurological symptoms I ended up seeing a neurologist. I had an mri which showed lesions. Over the phone the dr told me my mri results were consistent with her first assessment that I was having “silent migraines” but then she had me come to her office and told me that while a dr with less experience with ms would likely disregard it she (with her experience) saw my mri results as consistent with an early ms diagnosis and said she could only confirm the diagnosis with a lumbar puncture.

Unfortunately, during my visit with neurologist I was experiencing some “brain fog” so I didn’t ask her about the (weird) discrepancy regarding what she said over the phone and what she was now saying. I did ask if the lumbar puncture were to confirm ms if that would change my treatment. She said no so I said no to the puncture.

My b12 and vitamin d tests came back low and after a few months of taking supplements and getting glasses (cured my vertigo) I took ms off the table as a possibility. Over a year later, I’m doing really well now but new nerve pain has come along in my hand and jaw and I’m thinking ms may still be a possibility.

I will go to my gp this week but I’ll put off seeing a neurologist till January when, hopefully, my insurance is better and I can see someone other than the neurologist I mentioned.

Anyone have any tips for confirming yes/no ms like what to ask a dr?

Did you find a diagnosis helpful even if you only took medications for symptoms of ms?

How icky is the lumbar puncture? I have lumbar radiculopathy and was in a lot of pain for a few years, it’s finally not a big deal and well managed and I’m terrified the puncture will somehow recharge the pain!!!

Did you get a lumbar puncture to confirm a diagnosis? If so, how important/helpful do you think it was?

Any feedback would be awesome and appreciated.

Thanks for reading :wink:

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I don’t know the detail of the McDonald criteria (the standard criteria for dx-ing MS) but here’s a link to the (reputable) MS Trust, in case you haven’t come across them.

​One thing I am clear about is that any new relevant information/event will be inclined to change the diagnostic picture. So don’t assume that you will just be back to square one with the medics.

My LP was fine, by the way, but it my case it was just to confirm what we knew already - putting the matter beyond doubt. Neurologists (or some of them) like a nice, secure, water-tight dx. But it isn’t always needed.

Alison

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Now I think about it, part of the reason I agreed to the LP was the hope that the results would come in and the neurologist would say, ‘Silly me, alison100! I got it completely wrong and you don’t have MS at all! What was I thinking?’ He didn’t, of course. But I think that, psychologically-speaking, I did actually need the gates of doubt to clang shut in a decisive way, and the finality of the LP result did that. It set me on the long road to getting my head around a changed world.

Alison

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Hi there,

Apologies in advance if this answer is going to come across as a bit off-topic and unconstructive, but what do you mean about leaving it 'til your insurance is better?

If you have already visited a neuro, and been given a tentative diagnosis of MS, it’s highly unlikely that any “new and improved” insurance starting January would cover you for a condition you’d be deemed to have had already.

I can’t say for sure, without knowing more (about your insurance policy, not your health), but in most cases, any existing condition for which you’d already seen a doctor would be excluded from a new health policy.

Unfortunately, it’s a bit like trying to buy fire insurance once you’ve already smelt the smoke - usually a no-no.

I’m not absolutely clear whether you are in the UK. If you are, then a couple of things:

Do you have any reason to think this neuro is “not good”, or “not suitably qualified”? She certainly sounds quite conscientious in following up signs she admits many of her colleagues would have dismissed, so what would be the value in seeing another one, and if you did, why must it be private (on insurance) and not NHS?

Don’t misunderstand - I’m not anti private healthcare at all - it’s how I was diagnosed. BUT, almost all private sector neuros are ‘moonlighting’ from the NHS anyway, so going privately will get you a faster appointment, and probably nicer surroundings and nice coffee, but typically NOT “a better quality of expert”, because they’ll very likely be the same person you’d have been referred to on the NHS anyway! Mine was. Equally, I don’t think better insurance in the new year (even assuming it doesn’t exclude any investigations already started) will buy you a “better” neurologist. Unless you have a particular reason for disliking or distrusting the current one, I’m not sure what you will gain by shopping around for a different one. She already sounds pretty sharp and on-the-ball.

As for the rest - I was diagnosed without a lumbar puncture, using symptom history and MRI evidence only (I did have visual evoked potentials, but they were normal - so didn’t assist diagnosis).

So it’s certainly possible. My conclusion is that it probably delayed diagnosis by a few months, because I had to wait six months for a follow-up MRI scan, and it was on that basis they were able to confirm new activity, and thus the diagnosis. However, it’s impossible to know for sure, because I might have had the LP and it been normal (like the VEPs), so in that case, we’d have learnt nothing, and I’d still have had to wait six months for the additional MRI evidence.

To put it in context for you, I believed I’d already been ill for years at the time of my diagnosis, so my approach may have seemed rather laissez-faire in comparison with others. But I honestly wasn’t that desperate for answers, when I sincerely believed (and still do) I’d already had it years without dying - or anything else dreadful happening.

I don’t mean I wasn’t worried, of course. Nobody is “not worried” when confronted with a possible MS diagnosis. But I did think: “Oh well, I’ve probably had it donkeys’ years, whatever it is”, so I knew it wasn’t a fast killer, for example, as I was still around and doing fine, so that took some of the urgency off, for me.

I do believe that IF someone has MS, the truth will eventually out, whether they aggressively pursue answers, or whether they don’t. I’d never really pushed hard for answers, despite feeling ill for some time (I’d been wrongly told it was just simple wear-and-tear), but the answers still came in the end.

Left to its own devices, it doesn’t just go away. I don’t think it was ever a matter of IF I was diagnosed - just when. If it hadn’t been when it was, it was only a matter of time.

Tina

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My take on the diagnosis is similar. If I were to have ms it’d explain some things but my overall health is good right now. Also, like you mentioned, if it’s ms it’ll show up again and eventually be pretty obvious. After the first mri I accepted I wasn’t so motivated to confirm the diagnosis and decided to go about things believing I don’t have ms unless something else came along. The low b12 blood test also led me to the conclusion that my symptoms all stemmed from that and the original diagnosis of lumbar ridiculopathy (explains fatigue and some cognitive stuff I was experiencing since the pain was pretty high and chronic for a few years).

The thing about insurance: in the U.S. it’s no longer legal to deny someone medical treatment based on prior conditions (yeah!!!). I’m sorry to hear this is still not the case in the UK, I think it’s a terrible practice (I delayed treatment and I’m sure made things worse 6 years ago because I expected a change in my insurance, arghh). I’m signing up for new insurance now for January and have the opportunity to pick coverage that would allow me to go to Stanford’s ms center (this would be as good as it gets care in the U.S.).

The neurologist is probably fine, it’s highly likely anxiety influenced my opinion and I’m not keen on her approach (she talked to me like I was a five year old but some people in “helping” jobs just seem to do that and their just trying to be kind even tho it kind of makes me want to scream).

Thanks fo the reply!

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I went to the dr today realizing I really should get everything in my record. Thankfully, things turned out well. I thought my jaw pain might be tn rather than tmj because there was burning/shooting pain but he checked me out and thought tmj was the diagnosis. He also thought the nerve pain in my hand was likely a ganglion cyst (which is what I had thought).

When I asked about ms, he said he didn’t think the hand and jaw stuff would be related to ms (there was also a minor nerve pain thing in my arm a few months ago) and said the nerve pain was more likely a peripheral neuropathy. He also said that ms would present differently and I’d be experiencing weakness. I haven’t been having any weakness in limbs, in fact, I feel stronger everyday now that the lumbar stuff isn’t messing with me so much.

So, I’m taking ms back off the table but I appreciate the link and am keeping it for future reference!

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Hi

Thought I’d chuck my thoughts in the ring!

Was diagnosed with PPMS 16 months ago after an 18 month diagnosis period. Which included 3 MRI’s, 2 sets of evoke potentials, numerous blood tests and a lumbar puncture and seeing 2 consultant neurologists one of which was a professor who specialised in MS.

Due to the fact I never had remission in over 2 years it was looking like PPMS but my lumbar puncture done very early on was negative but was told this was not the most reliable part of diagnosis. The nail in the coffin so to speak was the MRI’s which showed progression between all 3 of them. Regards the lumbar puncture, before hand I had read loads of horror stories about them, but let me say it wasn’t that bad at all, it’s the thought of what they are going to do that frightens people I think. So really don’t worry if you have to have one at some point!

MS is a nightmare to diagnose and personally it’s the most difficult time for a lot of people. I do think with all the research being done there should be some focus on how to diagnose quicker and more accurately, but that’s just my thought. I say this because actually life got easier after diagnosis from an emotional point of view, and I do believe the emotional side of things has an effect on the physical side of MS.

Regards to you all.

Mr Wobbly

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Thanks for sharing your diagnosis process. I remember reading about it taking years for a lot of people to get diagnosed but never a description of what it involved.

MS seems to be so varied amongst people with so many potential symptoms, if your body is quirky and going a bit haywire like mine was it’s easy to get convinced ms is the reason.

I was supposed to get another mri a year later but the year came and went, I didn’t want to think about it and didn’t really question my approach until this cluster of pains showed up. When my lumbar ridiculopathy was really bad I tried so many drugs and treatments before I got any relief. I’m weaning off the last bit of neurotin now and just want to be drug free. I figure as long as I go to my gp for stuff that comes up I’ll be covered.

It’s also reassuring to know you all are out there if I need to revisit a possible or actual ms diagnosis in the future. Thanks for all your responses, super appreciated!!!

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It was nearly three years from first signs to diagnosis for me .I have other problems that made it very difficult to diagnosis PPMS .