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New diagnosis

After a few months speculation by gp and another consultant, I had my first appointment yesterday with a neurologist. A the end of the consultation she said that she felt sure that given two separate episodes and all the symptoms I was presenting with, that I had two areas of inflammation on mt brain stem and around the neck area. She then said it was due to demyelination. She want s me to have further MRI of brain and spine, plus VEPs and a lumbar puncture. Does this sound like she was saying it was ms? Is a LP necessary if the other tests confirm it? Sam xxx

Hi Sammy, bit confused… have you already had one MRI and the neuro was talking about areas of inflammation on that?

It does sound as if she thinks that your symptoms might be caused by MS… yes… I sorry to tell you that… but at this point it is not a definite dx.

She wants to do another MRI to see if there are any changes since the first (if there was a first) and having an LP is normal procedure.

As you probably know, there is not one single test for MS so they put lots of pieces of evidence together to dx… bit like a puzzle… and the LP result can be an important bit of that puzzle.

Many people worry about having an LP (I certainly did!) but for vast majority of us it is nothing more than an uncomfortable experience… a sense of pressure at the base of spine where they take the fluid from, and then having to lie flat for a few hours (while your brain makes more of the fluid).

Well for now hon it does look as if they suspect MS… but you will have to wait for more results before they will dx definitely… and of course it might still turn out not to be MS.

Take care and I hope you get some definite answers soon,

Pat x

Hi Sammy,

I don’t think you’re quite diagnosed, yet (if you were, she wouldn’t be ordering the further tests) but it sounds like you’re on the home straight, and yes, she does believe it’s MS.

I was diagnosed with normal VEPs and without a lumbar puncture, on evidence of symptom history and MRIs alone. The NICE guidelines say you do not stictly need the LP unless other evidence is ambiguous.

BUT, most NHS neuros still seem to request it as routine, irrespective of the other evidence. If you are really adamant you don’t want one, you could query whether this would stand in the way of diagnosis. Also, what would be the effect of a negative/normal LP? Would you be diagnosed anyway, or would it weigh against an MS diagnosis?

It might be too early to tell this, as it could depend on the evidence from the new scan + VEPs. But it’s certainly worth discussing what the advantage would be to you, of having it - particularly as it cannot prove or disprove MS - it’s only one part of the jigsaw.

Tina

x

Please do not worry about the LP Sammy. Mine was a real non-event. A sharp scratch for the local, some pressure and that was it. No awful headache afterwards or anything! It may speed up the diagnostic process which can be slow and ponderous. Good luck - let us know how it all goes. Teresa xx

Hi Pat, Sorry for the confusion. I had a brain MRI back in january that was clear, but I think that she felt the scan was not in depth enough and wants the spine too. Also the concern was that the slices on the brain stem scan may have been too thick to pick up a small lesion. She also wants gadolinium this time too as a contrast. I guess she was sticking her neck out saying this without obvious back up, but I also fear that she must be very sure that with all the symptoms I have to suggest it at this pre test stage. She mentioned about the inflammation being at the neck level, and funnily enough, not sure if it is related, you may know better than me, but I have noticed the last few days that my neck gland were up. Part of the inflammation process or just coincidence? I am not sure really. Sam xxx

Hi again Sammy,

(Sorry, I know I’m not Pat…)

In the light of what you’ve said about the earlier scan being clear, I think you’re a little further from diagnosis than I initially imagined.

I assumed she had certainly seen demyelination, but you have clarified that she’s inferring it from symptoms (which is completely legitimate, by the way - but I’m sure she will hope to see something as well).

The fact there’s been no MRI evidence so far may clarify why she’s also asking for the LP.

Inflammation of your neck glands, and inflammation of the cervical (neck!) part of your spinal cord are two entirely different things, and there’s no way inflammation of the cord would be felt in your glands. The commonest cause for inflamed glands is some kind of infection.

If I’m remembering recent history correctly, that is a possibility, as you’ve had sudden onset symptoms that might be part of MS, but might also be down to a virus that’s simply aggravating it.

Tina

I remembered what you said the other day Tina, and did wonder if I may have had some kind of virus. Thanks all of you for all the info and kind words, it means a lot in this weird point in my life. Hopefully I should get the scan very soon, and some answers. Sam xxx