MS diagnosis

[Kay232]

Hi, I had one CIS a few years ago. I then lost feeling again around the end of last year which lasted for over a week.
Upon return to the hospital I was told that 'clinically' I had MS but wouldn't put it in writing until I had a lumbar punch.
I have then been given my very own MS nurse who has told me I have MS. I contacted my GP who has all the letters from the Hospital and she has confirmed I have MS.
My question is 1
Do I have to have a lumbar punch to confirm this to satisfy my insurers?
2 MY MRI shows lesions, one on my brain and another at the top of my spine.
I have been told I have MS but they haven't confirmed this with my insurance. They have given me mess for pain and muscle cramps so am confused...I have it or I don't, why won't they write it down? They have given me all the papers and leaflets full of MS info so I'm confused. Should I find somewhere private for a second opinion?

[zoefromsussex]

Is your MS nurse good? Mine has lot's of info but I find it difficult to get hold of her because she's so busy. Once you choose & start a dmd, you will also get a support service from them. Just thought I'd add that!

[SarahL2491]

as the others have told you, the LP isn't that big a deal, I dreaded it for years and didn't even know it was done until they were finished.  Mind over matter, really.

It also doesn't prove much, mine was negative for O bands and I have been Dx with MS with 6+ lesions on first MRI, and more on 2nd plus CIS.

We all understand you have different rules in the UK and someone should be willing to educate you!  If not, go to the national MS society's website, there is tons of information there and if am not mistaken, there is one for UK, someone correct me if I am wrong

[zoefromsussex]

It does seem like things are done slightly differently here in the UK as every doctor seems to have their own idea of confirming a dx. I had to have a LP but I know people from different areas who haven't had to had it done. All I would say is that it can help to confirm things in your own mind if you have doubts about the dx (although, saying that I STILL doubt my diagnosis at times! lol) The LP is not as bad as you might be thinking. They're carried out by doctors who are used to doing it and if you keep very still and try to relax as much as possible, it's actually painless if a bit uncomfortable. I was unlucky with the after effects but that was probably just because I had mine done in London and had an upright journey home. The other thing is I've noticed people from the USA mention the levels of O Bands but some neuro's (my own included) won't discuss this. They just say that O Banding was found fullstop! I think each lab has their own rules on what constitutes a positive result.
So, to answer your original question: I think you'll need to just ask your consultant to write to your insurer if they need specific information because you probably won't get a further mri on the NHS unless there is a need for it (ie if your ms worsens despite a dmd)
It's frustrating not having definite answers but I guess that's the nature of ms and none of us really know what will happen next!
All the best, Zoe

[supermum_ms]

Hi Kay, I was just thinking that your current neuro maybe able to help you set up a second opinion with an MS specialist, especially if the delay in dx is related to the health system, if the referal is coming from your neuro and not you seeking it, i'd of thought the system would find that harder to refuse. Its not unusual though for neuro's to 'wait and see' but considering your previous CIS dx, the second attack your having now, should of (imho) taken you out of limbo land.

Regarding the LP, its not necessary at all for dx, though for a lot of reasons its still being used before a dx is made, its a valuable test if its to confirm but when its used to dispute or hold off an MS dx's, then its frustrating because there just isn't any 'medical' rational behind doing that. It actually makes sense if a person's dx is unclear to have other tests that can 'add weight' towards dx's (LP, EVP) but all too often we hear of pwMS, who couldn't get dx's without it or not having enough OBands, even though they totally meet the Mcdonald criteria.

This is the Mcdonald Criteria.....

http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full

The LP isn't really as big a deal as people think it is, the reality of it just doesn't live up to peoples anxiety, if you "search this community" which is at the top of your screen, you'll see what i'm saying. Though before making that choice, i'd be asking a few questions eg

1) Will i be dx's even if i dont have 2+ Obands?
2) If I have another MRI with and without contrast and 1 or more 'new' lesions are detected, would i then get dx, even without having the LP?
3) If there are both clinical signs of MS and MRI evidence of lesions in at least 2 MS locations and that alone is enough diagnostic evidence that i have had at least 2 demylinating attacks, What exactly are you looking or waiting for if I already meet the Mcdonald Criteria now?

I'll end this with the words of my little wise owl, "who would want to be normal anyway, at least my life is never boring!"

Hugs.........JJ      

[kwarendorf]

Hi Kay - If you need the LP to satisfy your insurance don't sweat it. It is not always the horror it's made out to be.

Mine was a total non-event. No pain (before, during or after) no headache etc. I had it done at 6:00 in the evening and was back at work the next day.

Kyle

[Kay232]

Thank you...
Yes, they told me I had it. Every time I speak to them I always ask to make sure.
It is with the NHS and they are lovely but now this LP has been raised I'm scared to death. I asked if I could be put to sleep whilst they do it but was told I couldn't be. My I
Critical life insurers want confirmation in writing...my GP has confirmed I have MS but the neuro doc said ' clinically' and ' will most probably be' without evoked potentials or a lumbar punch'.
I'm on amytripotine and now starting one beginning with a G to help with pain. If I didn't have to work I could rest and probably not have so many problems but because I'm trying to keep up with everything life brings I need pain relief to get on. That's all they give me. Because I'm finding it hard to believe it is MS they are slowly dripping the idea of treatment to me but ' it's a long way in te future to worry about now' I'm told.
All my life I have grown believing the body manages itself and pills just speed up the repair or illness fighting faster. Im terrified of needles and know I need to get a grip but the very thought makes me flare up and sweat. It's more pain down the left of my limbs and numbness then sharp pains come causing me to flinch all the time. I walk funny most days and have a sensory impairment. I'm tired. I'm not me.
To look at I'm fine and I'm trying my best to remain 'normal'.

[Lulu54]

It sure sounds to me like you have MS.  And you should not need the LP - it doesn't prove or disprove anything but is just used for supporting evidence.  Can you have this discussion with the MS nurse?  If they gave you literature they must be positive you have MS.

From your question about seeing someone private, can I assume correctly that you are in the UK on the NHS?  I wouldn't spend the money on seeing a private doctor if you can get the nurse to start treatment for you.

good luck -
Lulu

[tomas2729]

Hello,

Welcome to the party. Sorry that you are having issues.

I would get a second opinion for sure. If I were you I would want to know what the OCB level in my spinal fluid was. If it is too high, and you have lesions, you pretty much have MS.

I hope things work out for you.

Best,

Tom