I want to say yes but I'm not sure.

I was having an exacerbation when I had my LP. My neuro said my LP might have come out negative had I not been in an exacerbation

There are probably a lot of people who would have been considered really clear-cut cases of MS before there started to be so much emphasis on MRI, but they are now either limbolanders or "sort of limbolanders" like me. I've been told that there would have JUST BEEN NO QUESTION about my diagnosis back before doctors started relying so heavilly on MRI as they do now.

Perhaps we need to go back to the "drop us in a hot bath" method (or even just stick us in the sun for too long)?

It would certainly be sure indication for me, but then again, so would exposure to the cold!

It is my understanding that there are generally more O-bands showing when we are in a relapse.

Cherie

Hi it's great to see some friendly names about.

From 98 after admission to hospital with ON and mobility problems they though MS with me.Even after a few nasty attacks my MRI was still normal.My first neuro said 5% of people with MS can have normal MRI'sand LP.Hedischarged me with ME.

As I'd been so poorly my family had already asked GP for a 2nd opinion.Luckily this was 5 weeks after being discharged from first.I saw a well respected European MS Specialist here in the UK.

He examined me and found optic atrophy,nystagmus,brisk jaw jerk,spastic paresis,positive babinski.He wrote in notes "I think this is MS".He admitted me into hospital and for the second time I was given vigourous testing for everything.As it was a teaching hospital I was also examined by many Dr's including neuroPhysiologists.

My VEP's had been abnormal since 98 but optic atrophy showed on MRI.MY SEEP'S showed nerve damage to right arm and leg.MS Specialist came to see me on Friday morning and said he thought it was MS but it was rare.I asked what he meant,he said rare not to show lesions but not to worry as this was usually benign.

Istayed with him for 4 years saw him every 6 months but never once was examined.The only time I was examined was when he was away at a conference and a colleague did the clinic.My legs had been scissoring and back arching so he eamined legs and increased Baclofen to 80mgs.

I then went through nightmare with spasms,loss of mobility etc.He wanted further scans before considering mitox.I deterioated and had to have physios and OT out to home for 6 weeks.I now had crutches and a wheelchair and was referreed to Orthotics for a brace.

After waiting 12 months for scans with NHS mySpecialist intervened andgot angry.Ifinally got scans after15 monthsJune 2006.My scans were once again of brain and cervical spinal cord.I have never had a full spinal MRI or an enhanced MRI.

As my brain scan still only showed optic atrophy I was told it can't be MS.The reason being MRI would have to show changes and after8 years of symptoms all MS patients show cerebellar atrophy.

I was discharged told they know something is wrong they just can't identify it.I haven't seen a Dr since August 2005,apart from GP I lost faith.

I take my Baclofen plus others,fatigue I fight every day and would love 12 hours a day out of bed,mobility and balance are a joke.

The best ismy Dad had bilateral ON and mobility problems,I've been told it can't be genetic.

Very few MS Specialists will now say MS with a negative MRI or a brain MRI only showing optic atrophy.

Goodness Spuggs - you have really been through the wringer! What a horrible experience.

It's no wonder some of us are fed up with doctors and are angry. You deserve better.

I still think MRI's, while necessary, just don't complete the picture for some when they don't show lesions. It's understandable that neuro's don't want to dx without the telltale MRI reports saying lesions because of malpractice suits. But that doesn't help limbolanders.

I'm sorry you have had to go through such terrible pain and suffering. 80 mg of Baclofen should be enough to pin down a dx don't you think?

I remember your story from before, Spuggy. I always get upset when I read that they haven't ordered an MRI of the thoracic region. Is your spinal tap also normal?

You've had to deal with way too much without a diagnosis.

I still have periodic MRI's. It is one way my neuro can determine if the disease is becoming more active.

If I were on the abcr's I'd want them periodically to be sure I should stay on the drug and not switch to a different one.

Afterall, you can be getting lots of new lesions and no clinical signs of it.

But, what if it the MS IS 'becoming more active' (according to the MRI), Boss? Does this really prove/disprove anything?

I listened to a Neuro's speach from a Biogen conference in Las Vegas a while ago, and he presented monthly MRI's that showed that the results are entirely different from month-to-month. Sometimes there was lesion activity, but no attack going on . . . and vise-versa.

Some people have tons of lesions, and no problems, and others have very few, but are very disabled. Does having active lesions prove that the the disease is progressing, and does not having active lesions mean it's not?

I've only had one MRI in the last 15+ years, because personally I think the MRI is only reasonably effective as a diagnostic tool. Otherwise, the results don't really tell us much anyway, IMHO.

Cherie

i could not agree with you more. i often wonder if the importance of mri's are over stressed because it's the best tool they have at this point in time?

(i reached this conclusion after a butt load of mri's this last year....10 to 11 in 12 months to be precise)

everyone who has had ms for awhile knows lesion load does not correspond with disability status amongst other things.

We are fast becoming a Big Pharma's and some Docs worst nightmare. ....Getting to smart for them and becoming proactive in our own health concerns and care.....Muahahahaha!!