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Roller Coaster Ride.

Hello,

New to the forum and to the whole MS world but am slowly reaching the end of my tether.

Husband was told in January “showed signs of MS” after having an MRI scan for an unrelated matter. We privately paid for a neurologist, who examined him and from those tests stated 99% certain its not MS (he was not symptomatic and as far as we are aware he still isn’t). Only way to be certain was to either have another scan, or to 100% draw a line under it a lumber puncture - which is what my husband elected to do.

Fast forward to the results and he is told, the lumber puncture does show that he has MS. He will now be referred to an MS Team. 5 weeks later we are still not making any progress with a referral or actually getting any information which is useful or helping us. Yesterday, he spoke the his GP and she has received a letter from the neurologist which details the test results, but also says - “he’s reluctant to give a formal diagnosis” at this point and that he’s basically asking the MS team to provide a second opinion. The letter to the MS team does not include this details and is a straightforward referral.

Has this happened to anyone and is it normal? I thought from previous conversations that the lumber puncture would be a definitive answer for us and not again be plunged into this circle of uncertainty and worry. Why would the results be disregarded and where do we go from here?

Is there a reason for the reluctance in a formal diagnosis or to be cynical is this all down to funding and service provision? I assume that without a diagnosis he will not be eligible for any treatment/preventative treatment options that may be available.

Would be grateful for advise/ experiences that anyone is willing/able to share.

hi LB

diagnosis of ms has to abide by the macdonald criteria which says that there must be evidence of more than one attack and then lumbar puncture to check for oligoclonal bands in the cerbro-spinal fluid.

however i told my neuro that i had a history of strange symptoms and my first MRI was accepted as evidence.

i was going through a relapse at the time i had my mri and so it must have shown old lesions as well as new active ones.

i had a broken big toe as well due to a fall caused by drop foot.

my explanation of the macdonald criteria is difficult to understand, i barely understand it myself.

so according to my own experience it would be good to be having a relapse when having MRI.

anyway take a list of questions for the appointment.

by ms team the neuro probably means an ms nurse will be allocated and maybe even discussion about DMDs.

sorry my reply doesn’t help that much.

best wishes to you both

carole x

Hi Carole, Thanks for replying. I’d never heard of the protocol so it’s good to have something to look up. Just very frustrating to be told the lumber puncture would give us a definitive answer when clearly it wouldn’t. Wish he’d never had the first MRI - not knowing is much better than the position we’re in now.

LB

make sure that any new symptoms are on your hubby’s medical records as any new pieces of the jigsaw puzzle will help the neuro.

carole x

Hi To add to what Carole has said, this is a link to the Mcdonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria It’s not the easiest thing in the world to explain, essentially it’s a combination of verified relapses and diagnostic evidence. 95% of people with MS have Oligoclonal bands present in their cerebrospinal fluid. This is what the Lumbar Puncture is done to check for. And this would be the reason why after the neurologist stated that he didn’t think it was MS, he changed his mind. And of course, the neurologists don’t want to diagnose MS if they’re not 100% certain. It’s difficult for them to take it back once they’ve said it is MS. Many people do have a similar pattern of being told, ‘it looks like it might be MS’, followed by, ‘oh not its not’, then, ‘maybe it is’. I don’t think it’s a funding issue, it’s much more prosaic than that. The neurologists could be criticised more for their lack of clarity when discussing a potential diagnosis rather than a reluctance to diagnose based on monetary or service provision motives. This of course doesn’t make it easy to live through. I hope your husband gets a proper answer soon and can then hopefully get some disease modifying drugs. These are supposed to reduce the number and severity of relapses. So the sooner his diagnosis (if that’s what it’s to be) is confirmed, the sooner he can get some DMDs and start getting on with life. Sue