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.