I’m new here I am seeing the neuro this week and wondering if there are any particular questions I should ask? Also, am I likely to receive a dx with the following:
MRI and showed one lesion on my spine, LP positive for oligoclonal bands, numbness down one side, pins and needles down the other side, electric shock type feeling when I bend my neck, vibrating feeling in legs. Had a short course of steroids that didn’t really help. I do have more symptoms, but I can’t remember them at the moment! I have had headaches and pins and needles on and off for the last 15 years and had MRI’s but they haven’t showed anything before.
Are there any other tests I can ask for?
Also, if I do receive a dx, how does the neuro tell if it is RRMS or PPMS?
At the risk of being told off I will repeat a lovely message from our resident PHD; Karen (she must be away).
It’s really hard to give advice that will definitely pay off, but there are some fairly standard things that are usually good to stick to.
Assume that the neuro will be pressed for time. If he/she isn’t, then fine - you can add more info from memory as required, AT THE END - adding info as you go might waste valuable time!
Be prepared: Be able to tell the neuro your history & family history in clear, concise statements. Don’t assume that they know anything. Don’t waffle. Take it chronologically. Take it steadily; don’t rush - be methodical.
Don’t dwell on the minor things. Stress the big things. For example, “There have been a few things that have happened over the years including numbness and extensive buzzing and pins & needles in various bits of my body, but in April 2008 I went blind in my right eye for 4 weeks. Six months later…” I.e. get the minor AND the major things out there in one go. (If you spend 10 minutes talking about your left foot being tingly, then the neuro may have switched off by the time you mention optic neuritis - not the best of use of time!)
Don’t hand over your lists. They are for YOUR benefit. Talk through them. Give the neuro a COPY at the end, if you feel that they haven’t necessarily made thorough notes.
Your symptom list should not be a blow by blow, day by day account. No neuro has the time or patience for this level of detail. Make sure to get your most important symptoms in there, when they started, how bad they are/were. Group things - did you have periods when you had loads of stuff happening and other periods when you were fine?
Be honest. This works both ways: don’t exaggerate, but also don’t play things down.
Questions are personal - we all have different things we want to know. Saying that, the fact that your last MRI showed lesions is important (it’s lesions btw, not liasions). I’d want to know what they pointed to. How they compared versus different diagnostic criteria (do not just mention MS - some neuros do not like the fact that patients come in with a working diagnosis of their own). I’d want to know if the fact that I had had symptoms / attacks of whatever it is since the last MRI was relevant (yes it very well could be, but let them say that). I’d want to know what the next steps were. I guess I’d want to know loads of things! So having a list of questions is pretty important too - but, again, know what the priorities are. If you are going to only get time for some of them, make sure you get the biggies in.
Other people may have a few other things to add!
It’s a right pain, but it’s often not enough to just sit and answer the questions
One thing I will add ask Neuro if they have an MS Nurse you could contact.
I don’t remember writing that George! It’s much better than the one I normally cut and paste these days, lol
Hello fizzy - and welcome to the site
Just to add that whether or not your neuro diagnoses you will depend very much on the neuro and how strong the evidence is that you have had symptoms / attacks before this. The official criteria are more than one attack and at least one lesion in at least two places typical of MS. So, at the moment, you are one lesion short. But then you seem to have a long history of symptoms. Therein lies the reliance on the neuro’s own opinion - he/she can diagnose you, but it would mean going against the recommended MRI criteria and that needs a neuro with confidence in the diagnosis.
The way to tell the difference between RRMS and progressive MS is if the patient’s symptoms are gradually getting worse or not. The key measure tends to be mobility: someone with PPMS (or SPMS) will usually have increasing difficulty with walking, but it’s possible to have progressive MS and only minimal mobility problems too; the key thing is gradual progression of symptoms and no lasting recovery.
Hth, and good luck at the appointment
Thank you both for taking the time to reply to me. I had never thought that the neuro wouldn’t have time to listen to all my questions, so thanks for mentioning that…I will write my questions in order of importance!
I have seen the same neuro a few times over the years, so I was hoping I wouldn’t have to go through everything that has happened in the last 15 years. Is it likely that he will want to know this, rather than looking back at my notes?
I have read some info on CIS and wondered if he might diagnose me with this because of the one lesion?
CIS is one attack, one lesion so, yes, it’s possible. But that would be ignoring your previous symptoms. Depending on how much weight the neuro gives those, he could also diagnose ‘probable MS’ (at least two attacks but one lesion, or vice versa) or decide there is no better explanation for your symptoms and ignore the criteria and go straight to MS. If he’s witnessed previous attacks then I would bet on probable MS or MS. But I’m not a neuro! And he may have other possibilities in mind too - MS is not the only cause of demyelination. Best thing is to try and keep an open mind. I hope the appointment goes well. Kx PS Have you had your B12 tested? Deficiency can cause neurologucal symptoms and lesions (especially on the spine).
Thanks for your reply. I have seen the same neuro in the past, but I don’t feel he has ever taken me seriously since my first appointment and has told me there is nothing wrong…all in my head! So really, I’m not sure if he will consider my previous symptoms or not. I will ask about the B12 testing, as I have no idea whether I have been tested or not. If I am B12 deficient, would I have tested postive for oligoclonal bands though?
Good point: B12 deficiency doesn’t cause oligoclonal bands, but it is possible to have false positives (as well as false negatives) so it’s still worth having done - your GP can do the form for you. Functional disorders / stress / anxiety / etc cannot cause lesions - so something caused that spinal lesion! Kx