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Scared & uncertain

Hey there, I’m new to the site and could really do with some support. I saw a neurologist just before Christmas as a result of an emergency appointment as I went blind in one eye. I told them of various other symptoms I had and an appointment was made for me to see a specialist. After seeing the consultant he was convinced I had MS, but couldn’t confirm diagnosis until I’d had an MRI which I had in January. The results of which have come back normal so my consultant is confused as he was certain that I had MS. He now wants me to have a lumbar puncture (I’ve had before when I was younger and it was horrible) after reading up on the subject of MS I’ve found that usually a lumbar puncture is used to diagnose MS if and when the MRI is inconclusive although the letter I got from the consultant said the there was very little chance I had MS as the MRI was ok. Now I’m having different symptoms but more frequently but still have no diagnosis, the thing I can’t stand the most is the fatigue. There’s no warning, its literally as if someone takes my batteries out. Has anyone else struggled to get a straight diagnosis? Or know of any reason I might need the lumbar puncture?! Many thanks,

Hi Mrs H,

I’m assuming you are a different Mrs H, as we already have one: one with a space, one without! How confusing!

Anyway, I would say the reason you need the LP is precisely because you have symptoms your consultant was “sure” was MS, yet your scans failed to back this up. So he’s looking for other evidence that could support his initial hypothesis.

I was diagnosed without a lumbar puncture, but that’s because my scans were compellingly clear (clear as in unambiguous, not clear as in nothing wrong, unfortunately).

It’s very hard to get an MS diagnosis at the best of times (one of the most difficult diseases to diagnose, as there’s no conclusive test), but the more so if your MRI scans were normal, as they tend to be viewed as the most significant piece of evidence.

Nobody absolutely has to have a LP, and diagnosis is possible without (I’m a real life example), but I think your chances of getting a diagnosis with a normal MRI AND without any LP evidence are virtually nil.

As you’ve been told there’s “very little chance” of it being MS, that may be something you’re prepared to live with, if you really don’t want the LP. You could just wait and see what happens, and if symptoms persist, ask for a follow-up scan in another few months. In general, the longer you have symptoms, the less likely the MRI would be normal - if it was MS, that is.

Be aware that even if you had the LP, it wouldn’t necessarily produce any new evidence. It might come out normal as well, in which case you wouldn’t be any further forward.

It could be worth asking whether you would be diagnosed if it was suggestive of MS. If you still wouldn’t, because of the uncertainty of basing it on that one test, then you’re certainly right to question what would be the point of the test, then. It might produce evidence supportive of an MS diagnosis, but still might not be sufficient on its own.

Tina

Oh no…2 Mrs H’s… one of you needs to change your name!! That said, welcome to the site, I hope you get the help you need : )

Hello and welcome :slight_smile:

I got confused about the name too so it might be worthwhile asking a mod/admin to change it for you so we can tell you and MrsH apart? (Some of us are very easily confused! If you send a private message to Stewart Cuminskey, he should be able to change your name I think. If you want to of course!)

As far as the significance of an LP goes, it does rather depend on the type of MS that they suspect and what else it can be used to rule out. If someone has MS-typical lesions on brain and spine, a clinical exam and a history that is consistent with MS, then an LP isn’t really necessary, but a positive LP is one of three specified diagnostic criteria for primary progressive MS (along with a brain lesion and at least two spinal lesions - diagnosis needs two of the three) so if someone has a clear brain MRI, but the neuro suspects PPMS, then an LP is pretty essential for a quick diagnosis. Lumbar punctures also don’t just test for MS so having one may well help to rule out other possibilities.

Neuros aren’t the best at communicating sometimes, so perhaps you need to ask them exactly how the LP will help before you decide whether or not to go through with it? If it helps, the rate of bad reactions to LPs has apparently gone down a lot over the years - they use thinner needles now which has cut back on the amount of “headaches from hell” that people get and they don’t make you lie flat for donkey’s hours afterwards any more either. I think most people find the whole thing is very straightforward now. (Saying that, I’m not sure I could go through one again - I had a 5 night hospital stay after my one and only one, but it was more than 15 years ago and I know it’s very unusual these days so I have to accept that I’m a terrible wimp!)

I suppose the best advice I can give you is to keep pushing for answers. There are lots of causes of optic neuritis (assuming that’s what you had), including vitamin B12 deficiency, genetic conditions and various neurological conditions - and not all of these have visible lesions on MRI. So, if I were you, I would ask for a spinal MRI scan, if you haven’t already had one, and for VEPs (visual evoked potentials) because the pattern of results can point towards different conditions and may help to narrow down the possibilities.

I hope you get some answers soon!

Karen x

No it’s not me !!

Ok now Im really confused, two Mrs H’s on one post ahhhh.

Just to add that (not knowing how old you are) Lumbar punctures are different and the needles are thinner now and it not as bad as they used to be, I had 2 in 2 weeks, ok so they are not the most comfortable of things but it will help them with diagnosis.

Good luck and change your name pleaseeeeeeeeee

Hi, struggled to get a straight diagnosis?

Oh yes!

Most members here could possibly be fed up of hearing my story, but then there are newbies and the un-diagnosed who haven`t.

I`ll try to keep it as concise as poss.

1998…left leg heaviness and falls

1999…saw GP and she said i`d needed to see a neuro.

There was a 10 month waiting list, so I paid £175 to go private.

he examined and questioned me at length and ordered tests, on NHS. He said he thought I had a serious problem.

MRI, LP, VEP, EMG tests all came back normal.

I attended clinic every 6 months and symptoms worsened…mobility was much reduced and spasms/spasticity caused a lot of problems. Baclofen helped

Nerve pain was chronic…amitriptyline helped.

PPMS was suspected due to clinical presentation.

2003 - 2010…was told I had 95% surety of PPMS

2010 - MS dismissed…new diagnosis of HSP (hereditary spastic paraparesis)

2011…HSP dismissed…PPMS likely again. More tests ordered, coming back normal.

2012…SP/cause unknown diagnosed

So there you have it.

i`ve been tossed this way and that so much that I didnt know my a… from my elbow!

In short, I know exactly how you feel hun!

luv Pollx

Hi guys appreciate all the advice.