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How stupid am I!!

Just had the phone call from my neuro regarding my LP results! Apparently they are ‘pretty inconclusive’… why am I not suprised! I asked if we are still thinking it is MS as suggested by my GP and himself whilst I was an inpatient in hospital having what he is now calling ‘my firat episode’… his answer was ‘I dont like the term MS so I will see you in clinic in January and wait for you to relapse again’… really?! How can he refer to it as my firat episode but then refuse to confirm my diagnosis?! And is it possible to confirm MS without an LP to back it up as mine was inconclusive?! Clearly I was stupis to expect it to be so cut and dry :frowning: now I just feel awful and cannot see a light at the end of the tunnel. Sorry for waffling on Sian :frowning:

Hello Whilesy LP is not definitive for a diagnosis of ms. Have you had any MRI scans?

Hi Sian I was diagnosed following a relapse from an MRI scan only. Have you had an MRI? Gina x

Yes I had an mri whilst showed 2 lesions on my brain… Sian x

Hi Sain

I think I’m right in saying that in the old system you needed something like 5 lesions or two ‘events’ before the called it MS but I am sure that i read somewhere that now any amount of lesions of the correct nature is accepted as having MS.

It could be that the person you have been talking to i just behind the times!

Goodluck when you next see him

Jason

sian

i feel for you-i did try to hint with my original reply to ur post however…neuro’s can even agree amongst themselves!

i feel for you-i really do. what follows is simply my view-my reality .if it makes sense to you then good-if not then just ignore. we all have to find our way of getting our heads round this…

the bottom line is nobody knows! neuro’s THINK they do but they dont really know. i often laugh and say it must be hell to be an expert in ms cos what does that mean?! its so variable and unpredictable and is very unique to each individual. of course there are similarities but no-one’s ms is exactly like urs.

i am not going to bore u with my story-just briefly

in the past 18 months i have gone from driving, belly dancing and volunteering to speech difficulties, using a power chair and 8hrs of carers, double incontinence blah blah blah…

no-one could have predictated this! the whole thing has been a huge learning curve for me but the most important thing for me has been honesty. my current neuro, gp and staff that have had to assist/support me ‘get it’. i dislike-in fact i see it as cruel- false hope and after taking honestly with these people they now tell me the truth AS THEY KNOW IT. i have beentold that sorry-i dont know by professionals. but they endeavour to find out and always get back to me with a response. i appreciate that. some do not-they dont want to face the reality (which i also understand but its not for me)

i was also advised years ago-long before ms and i became aquainted- dont ask the question if u cant handle the answer! i have learned to fully understand that now!

take care and give yourself time to get ur head around whats happening-time does help…

ellie

Hi -

I find the diagnostic criteria very difficult to understand… i have read & reread the macdonald criteia and still am none the wiser!

jason, it is interesting you say that nowadays the number of lesions needed for diagnosis is less than it once was… my GP said the oposite… she said that ten years ago, most people with any evidence of a demyelinating disease on MRI would have been diagnosed with MS, but she thinks that nowadays there is increased caution before ‘slapping that label on’ (her words!) and that consequently CIS is diagnosed more frequently than it used to be. It is funny that we have been told completely opposite views on this - just shows that how much opinions can vary, even in medical community.

Sian, I feel your frustration! first neuro told me ‘definitely’ MS or ‘ms like’ (???) after seing my scan, but then he did not confirm that in writing. When I queried if i had official diagnosis, he said he didnt know much about ms (not his area!) and that i had to see the ms specialist. I have about ten ‘spots’ on brain MRI, but most are very very small and non-specific, only 2 are clear demyelination. The MS specialist diagnosed CIS and said there was nowhere near enough on my scan for an MS diagnosis. I think I feel much the same about it all as you probably do - it is not that I ‘want’ an MS diagnosis, more that it is really upsetting to be feel like you are being told different things on different occasions.

It is a really really stressful situation to be in xxxx

I was diagnosed without an lp but that was 1995 so things may be different now. Actually I was offered an lp about six months before I was diagnosed, neuro did n’t try to persuade me, he said it was fine not to and he also pointed out that it may not give a positive diagnosis of anything. I think your problem (for want of a better word) now is not being diagnosed without an lp, it is the fact that you have a negative lp, I think this might muddy the waters somewhat. Cheryl:-)

Hi, I had an mri that showed lesions and a lumbar puncture that was positive for o bands but it wasn’t until the following year I got a definite diagnosis of ms with a changed mri ( more lesions) There was the mcdonald criteria for diagnosis. Not sure if they still use it? I know its awful not knowing what’s wrong. Take care Lynn x

Hi sian Getting an outright diagnosis for MS can be a lengthily process. Don’t feel stupid as it’s normal to want answers. When I first went into hospital I had no feeling in my feet and I had an MRI that showed multiple lesions on my brain and spine and also a positive LP that was consistent with MS but was diagnosed with CIS the consultant told me he was 99% sure it was M.S but couldn’t diagnose me on my first episode so had to wait until I had another episode before they would confirm it. I had another MRI and this showed new lesions on my neck so have since been diagnosed. I hope you have a follow up with your consultant and can discuss with them how your feeling and what’s the next steps for you. Take care Polly x

I was also one of those who tried to hint you might not get answers today, but I’m sorry you feel so let down.

To paraphrase - and simplify - the McDonald criteria slightly, the reason you cannot be diagnosed from a “first episode”, is it’s not multiple sclerosis unless or until you’ve had more than one. As far as I know, that hasn’t changed - you need compelling evidence it wasn’t just a one-off (the McDonald criteria call this requirement: “dissemination in time”), AND that it has affected two or more different parts of the central nervous system (McDonald calls this: “dissemination in space”).

It’s certainly possible to be diagnosed without LP evidence - I was, as I declined to have one! BUT, you still need dissemination in space and time (I know it sounds like something out of Dr. Who).

I had clear dissemination in space from the word go (separate lesions in different parts of the brain, and in the spinal cord), but they could not prove I had dissemination in space, because although I could recall earlier episodes, they weren’t medically verifiable, as I hadn’t been to the doctor, or been scanned at the time. So although they didn’t doubt me when I said: “Oh yes, I’ve had these before!”, my own report wasn’t quite good enough, from a clinical point of view - no independent evidence. They couldn’t prove the lesions didn’t all date from a single episode, because MRI can see them, but not date them.

So, I waited six months and had another scan. That showed new lesions that definitely hadn’t been there before, so I now had dissemination in time: Bingo! Diagnosis. IF I’d had another distinct attack before the six months was up, I wouldn’t have had to wait for the second scan, as dissemination in time would have been obvious. But as it was, I didn’t have any physical symptoms of new activity, so we only found out by scanning.

Hope this helps a little bit. As another poster has said, they are wary of being too hasty to slap on an MS diagnosis, because it’s a very difficult diagnosis to make, and the consequences of being wrong are serious - you might be treated for something you don’t have (and the treatment isn’t risk-free or trivial) and/or miss out on correct treatment for whatever it is you DO have. Nobody wants that to happen.

Tina

x

for me, the benefit of a diagnosis was that i had proof that it wasnt all in my head.

silly i know, but i’d started thinking that i was going round the bend.

(i now know that i have and gone round the u-bend too)

also you can check for critical illness cover.

carole x

How would things have altered for you had you had a definite dx of m.s. today?

I had an MRI, showed three lesions and from that I was diagnosed with M.S. there were no further test done other than this. They went off some mild symptoms (pins and needles) and then one relapse. Not sure whether this information helps you or not but thought it’d help to know how I was diagnosed maybe x

Thank you all for your message, it seems that each hospital/neuro has their own criteria when it comes to diagnosing MS. And as everyones MS is individual to themselves I get some get diagnosed earlier/quicker than others. Ill just wait to see what is said at my appointment in clinic in Jan… and in yhe mean time enjoy xmas and deal with my symptoms as best I can :slight_smile: Merry Christmas everyone :slight_smile: Sian x

Thanks everyone for your replies! It seems every hospital/neuro have their own criteria for diagnosing… so im just gonna get on with Christmas and manage my symptoms as best I can until I see my neuro in clinic in Jan! Merry Christmas everyone Sian :slight_smile:

hi sian, i went for years being ignored by my gp(could write an essay on his failiures lol)and only when i moved and got a new gp, who immiediatly refered me to a neurologist. was 2 months wait.

he got an MRI done, and some nerve reaction(things allover my head, and ahd to look at a checkered screen). a few other tests, eyes, reactions…

within a month i was diagnosed with RRMS. id had alot of bad relapse years b4, and was so relieved to have a reason for all the weirdness(and to know i wasnt imaging it all, or attention seeking, lazy…)

even my dad didnt believe me!!!

demand a second opinion sweetie, and tell em u want an MRI. lumber punctures r common to have,tho i didnt. they saw it on the MRI and the other tests combined…u have the right to get a second opinion. i didn like my new neuro, he thought he knew more than me bout what i was suffering with. i tried to like him, but couldn. and in jan im seein a new neuro :slight_smile:

dont give up!! took me 5 years to be heard, so try and keep ur chin up hun x x

cat x x x x

My neuro hates doing LP, he says they are very intrusive and rarely give good results for MS. No he really said that. He finally decided to let me have one and yes I had loads of O bands FOR MS in my LP, but the blood test they take alongside it, showed inflammatory markers, which negates the LP for MS…

I said to him so what does it me, does it mean i have something else going on, and he said more than likely, BUT for the criteria for MS if there is inflammatory markers in the blood test they cant give a diagnosis for MS.

So that was a waste of time then lol. I know people who have been diagnosed with no LP and then had LP and it showed no OBANDS, but because of the nature of their illness and the way it developed they still have the MS diagnosis… I had mine after a review of all my films and a meeting of the minds. My GP is also looking at a soft tissue auto immune disease as well now alongside.

Your result doesnt mean you dont have MS, like others have said you need to have more evidence and relapses.

Its a nightmare really we think we will get a result then blam it gets taken from under our feet.

Just keep positive and keep looking after yourself. I would treat it as though you do have MS at the moment and care for yourself accordingly. Its only a label anyway. x