Hello, I am a newbie, and my partner has had over 10 years of worsening symptoms which in the past year as they have been getting more marked we have both come to realise could well be primary progressive MS (as my late father had, so I am sadly familiar with it already).
He has had various tests over the last couple of years including an MRI which showed a couple of very small lesions in the brain and spine, apparently considered normal for anyone and “on the wrong side” to match the trouble he has with his right leg not working properly. In January he had a lumbar puncture, referred by his private consultant, for which we never got got any results and I had to chase for in March - eventually I tracked down a copy of the neurologist’s report to his private consultant at our GP surgery which had obviously just been added to his notes. I’ve calmed down now…
It said: “the LP has confirmed the presence of unmatched oligoclonal bands in the spinal fluid”. It also said, “based on the correspondence, it would seem he is not a candidate for Disease Modifying Therapies and I have not therefore arranged an appointment in the MS Disease Modifyling Clinic at present”. It goes on to say that it is “probably better that the results are filtered through you”.
Sorry for long post. We have decided against seeing the private consultant any more as we have little faith in him now and have made an appt to see a GP on Friday. Will he, in your opinion, be able to tell us what these results mean, or will we have to wait to see a neuro to have them explained? Can any of you guys explain what these results mean - we are prepared for an MS diagnosis so can take honest opinions. My partner is very resigned to the possible diagnosis and doesn’t want the “label” as he feels there is nothing to be done about this form of MS, but I am of the mind that knowledge is power and once we know we can do everything we can to help ourselves, even though he is not a candidate for therapies as the letter stated. Would he be suitable for an MS nurse for instance? Any help gratefully received. Thank you.
As you will see mult-sclerosis.org if you mean by unmatched a positive spinal tap will produce oligoclonal bands in the CSF but not in the blood serum that is correct. George
I’m not very good at wording things but didn’t want your post to go for too long unanswered. Hopefully someone will be along soon who can answer in more detail.
I have unmatched o bands and have PPMS so it would seem likely that your partner has too.
However, most importantly a dmd has been approved this week, the first one for PPMS. There’s a thread called Ocrevus on this forum and other information on this site and MS Trust. As you say, information is power and yes, if there’s an MS Nurse in your area he will be eligible.
Thank you very much for your answers. I’ll let you know what the GP says. My partner doesn’t like the sound of ocrevus because of the side effects, and thinks his symptoms might not be bad enough for it anyway, but we will ask the doc about it.
We saw the GP and although he said the letter did not necessarily mean MS (???) he has referred my partner to neurology, although it could take ages because of the triage system which is now in place. Hopefully they won’'t be putting him through any more tests as they have already been done, and he will be referred straightaway to an MS clinic. Not quite sure what that is/does - if anyone can illuminate me on what that entails that would be great. Thank you.
Do you have a copy of the mri images? If not, it wouldn’t surprise me if your partner has to have another one of these, or depending on the timescale an up to date one. I would hope he doesn’t have to have another LP. Other than that I would expect him to have the usual neurological tests such as testing reflexes and muscle strength.
Thanks for your reply Dogtanian. He finally got an email from the private consultant this morning whilst at work (the GP had been in touch with him I suppose) and was told he has PPMS. What a way to find out,in an email, it was very upsetting. No explanation given for the cockup and us never being given the results since Jan and all the delays. Consultant has suggested he has another MRI done now, as it is nearly 6 months since the last one, to see if it is still developing and so he might be eligible for Ocrevus. Just coming to terms with it all now really.
That is shameful. Not the kind of news you send in an e-mail. I had one of the rudest consultants who informed me, but at least he did it to my face, granted I did have to ‘run’ back and double check I’d heard him correctly. I just hope you can get a more personable neurologist to follow him up. I requested a referral and it was the best thing I did, don’t be afraid of asking. Just remember you have hundreds of friends here if you need help and there are excellent doctors and nurses out there. Make sure you get referred to an ms nurse and an occupational therapist to assess how you manage at home and provide assistance. Despite how you currently feel, you aren’t alone. Take care Cath x
I had unmatched 0 bands too and was never told i had MS any form of it. It took 10 long years. I had positive VEPS to start, then MRI several with lesions in 3 different places over time span, then the unmatched 0 bands, then finally several years after that another VEP test as my colour perception was way off, I had it october 2015 then told the results a week after my mum died in february 2016!! another positive VEP and PPMS. My GP told me i was 7 on the EDSS so it makes me a non starter for the new drug.
