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help please x

help!!! very new and not sure my message is getting through?

i am hoping for some info/support with a couple of things if at all possible? diagnosed on wednesday and in abit of a mess xxxx

Hi Dingbat, and welcome.

I see only two messages from you - this, and another identical to it.

What are the questions or issues you need help with?

If you’ve posted them already, I think it hasn’t worked, for some reason - please fire away with your questions, and someone will be along to answer - if not tonight, then tomorrow.

Tina

x

heya. Feel free to private message me. I was diagnosed last week and no how your feeling so if u fancy a chat PM me :slight_smile: x

Thankyou so much for replying!!!

To cut a very long story short, I was diagnosed on Wednesday after acute episode of left leg numbness/weakness and awful hypersensitivity three weeks ago. MRI of lumbar region showed syrinx and one inflammatory lesion. Was under care of spinal bods but they referred me to neuro who assessed me and said need further MRI head etc but let me go home from hospital (thank god!)

So, I had that and no surprises for me I had other brain lesions…( I was relieved in a sense as had been to GP four years prior with weird symptoms which he dismissed and again two years ago as they were still bothering me on and off) then last year had really bad vertigo and facial pain ( but I didnt see GP as I just decided that he would think I was mad as he had already told me that he thought my weird symptoms were, “all in my head.”)

I guess I am looking for some support as neuro still wants LP and I have argued with him that he has already diagnosed me and his reply was that it would rule out any other cause(although he said he didnt think that would be the case) and also supports MRI findings. Whilst I understand his reasons, I just would like some feedback from you guys if possible about whether you think he’s being reasonable. I have read all NICE guidelines etc and understand criteria for dx but I am struggling with this flare and I just want to be sure I have/will make an informed decision.

Thankyou once again for your reply, so nice that I can vent here and not feel like I am just moaning

xxxxx

Was it a neuro or ms specialist who dx you? The only reason i ask, is i was told i would need an lp but contrast mri with history and symptoms proved conclusive ms dx. Lp was not needed.

Hi Dingbat and welcome,

An LP only tells them something is going on in your body; it DOES NOT confirm what that something is.

As you say you have already been diagnosed so I should think you fulfil the requirements of the McDonald Criteria so no need for a very intrusive procedure.

George

Hi!

It was a neuro who diagnosed me, said at some point I will need my care transferring to MS specialist.

I am not trying to be obstructive in their investigations but I feel like I am going through enough at this moment in time without the thought of a LP!!!

xx

Yes, I do fulfill McDonald Criteria.

I think I may cancel LP. My gut feeling was to cancel anyway and I think I was just looking for some other opinions as my family all say, “ooh you should just have it!!” (I think they are old school and just accept that what the doc says is always right and always the best thing for you, whereas I am more than happy to decide stuff for myself, so long as have all the info!)

Thankyou all for taking the time to reply.

xx

Hi Dingbat,

My neuro wanted to do a lumbar puncture, but I declined, and received a confirmed diagnosis without it, but it DID take longer, as we had to wait six months for a second MRI to confirm new/continued activity. It did, and so I was diagnosed based on that and symptom history (like you, I’d had previous episodes that were not recognised as anything sinister, at the time).

But there’s always the possibility that if I HAD had the LP, it still might have been normal/inconclusive. A positive LP lends weight to an MS diagnosis, but a negative/normal one CANNOT rule it out. So my concern was that I might have the LP, only for it not to help one way or the other.

It may have made a slight difference that I was diagnosed on BUPA, therefore as well as being a patient, I was a paying customer! Therefore there might have been slightly more emphasis on patient (customer!) choice, rather than: “You’re having this because we always do it that way.”

Ultimately, you are free to decline any test, investigation or treatment whatsoever - it’s your body. The NICE diagnostic guidelines do not say you have to have a LP to get a diagnosis, and in fact imply it should only now be used where other evidence is inconclusive. If you have “classic” MRI findings, and a history of symptoms consistent with MS, then it should be possible to get diagnosed without a LP, as I was.

However, neuros, almost without exception, still prefer one. I’m not sure if it’s a case of “old habits die hard”, and they haven’t yet caught up with modern guidelines, or if they genuinely think to diagnose without is too uncertain.

It shouldn’t be insurmountable, though. It might be worth asking what would happen if it was negative/normal. Would they still go on to diagnose you? If they would, then why do you need one?

As an aside, I expected my insurance company to contest my diagnosis, because it wasn’t supported by LP. They didn’t, so the evidence must have been good enough for them - and we all know insurers don’t cough up money lightly!

Tina

x

Hello and welcome :slight_smile: Obviously I can’t guarantee anything, but an LP is a pretty straightforward procedure these days with the vast majority of people having no problems with it whatsoever. You’re right in that it’s not necessary for diagnosis, but it can certainly speed it up if the diagnosis is at all uncertain. I’m a bit puzzled why your neuro wants to rule other things out if he’s already diagnosed you with MS. Surely the ruling out of other things should be done before the diagnosis?! Before you cancel your appointment, I recommend you call your neuro’s secretary and ask him/her to ask the neuro two things: exactly what will the LP help to rule out and will the MS diagnosis still stand if your LP result is negative? I suggest that only once you have these answers will you have the right information to make an informed choice. Karen x

Thankyou so much. I spent a long time with the neuro on Wednesday as I went in armed with questions and lists of weird quirky symptoms I’d been getting. He was more than happy to make the diagnosis based on the MRI and clinical findings/history. I think you’re right in that ‘old habits die hard’ and I know this from experience as I am a nurse and have worked in a hospital for the last 22 years! I do think there is a slight element of surprise when you challenge a doc but like you say, it’s my body and I wouldn’t purposefully do anything to make matters worse, but having the LP isn’t going to do this is it!? He did try to say that because they also noted a syrinx, he wanted LP but I am still unsure about this reason too! Oh, I will be so glad when this flare is over, I am desperate to get back to work and drive etc etc its literally ‘doing my head in’ because apart from my wibbly wobbly dead leg and some pain , I have never felt so well!! Thanks once again for replies xxxx

Just read your post Karen, my sentiments exactly!!! I DID ask him why he still needed it if he had already given me dx . I said, " surely if you are unsure you would have said something more along the lines of ‘we still need to do further tests etc’ and I also challenged him with regards them not doing LP whilst I was in hospital if they thought that might shed some light on my symptoms! ( He didn’t answer)" I am planning on calling secretary on Monday am Much appreciated advice Xx

My neuro said that I had an MS dx to all intents and purposes, but that he liked to have as complete a baseline picture as possible on the file at the time of dx, so recommended an LP. I was OK with this because I wanted to be sure and was happy to go along with something that would make the dx absolutely watertight. The LP was fine and there were no surprises.

I am sorry that you have had an MS dx.

Alison

Thanks once again you guys x Urghh what a horrible situation made worse by the fact that I just tripped, headbutted my chest of drawers and in doing so knocked the mirror flying. Had to laugh else I might have cried!! Ahh well, guess I just have to accept that if my leg gets better it gets better and there is nothing I can do to help it really! Xxxxxxxxx frustrated.co.uk

I agree with what the others have said. I refused a lumbar puncture and was diagnosed with MRI and clinical history. It was good enough for my insurance company to pay out, so it was good enough for me!! X

Thankyou Emma-C X