well I got an appointment 23/5/16 with ms specialist, what should I expect, the neurologist has said I have primary progressive ms?
I had my first appointment with an MS specialist at Salford Royal Hospital on 9th May. I have RRMS but i’m assuming the process will be pretty much the same - i’m sure if anyone knows better they will add to the thread.
First step - blood pressure and weight checked. Next they took a few ‘baseline’ measurements of my manual dexterity - basically putting little pegs in holes and taking them back out again, one hand at a time. Then there was a cognition test which was transcribing code…very easy to do, they just measure how much you can get done in a certain time. After that they measured my walking speed. These tests I believe will be repeated each time you go to the MS clinic so they can track any deterioration in your condition.
Next was the meeting with the consultant. Quite an in-depth consultation where they go into your history, current symptoms etc etc etc. Next for me was deciding which DMT I should have (as i’m RRMS). Final job was to get some bloods done and then I was free to go. The whole process was quite painless (apart from the blood tests lol) and the clinic was efficiently run.
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Cheers for info great help. Good luck with yours x
I think it depends where you go. When I first saw the neurologist in Coventry, he did some strength tests on me - that is me pushing back against his hands with my hands or legs, watched me walk, checked whether I could follow his finger with my eyes. No peg test, no cognition test, no timed walking speed test. I think the MS services in Warwickshire are pretty poor, so you may get more if you are somewhere else.
Do you want to be PP? You may have a choice. Personally, I had MS with deterioration for years before I first had a relapse and I think the labels the neuros give people are pretty random. You can only get drugs if you are considered to be RRMS.
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I mean you can only get Disease Modifying Drugs if you are RRMS. You can have drugs for symptoms whatever label they give you.
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Hi I had the same as Sewing Chick, I go to Cambridge . I’ve been diagnosed with RRMS, but maybe it depends on what symptoms you have at the time and maybe what your MRI said, I’ve got my first meeting with my MS Nurse early June and a meeting at the end of June to decide what drugs I should start on.
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Hi Marion,
I think the testing Nanajuls had was pretty comprehensive and unlikely to be done everywhere. I’ve never had that many tests done on a first visit. In fact I don’t think ever had that many tests done on any single neurology appointment. Maybe in total, adding up what a neurologist has done, plus a physio and a neuro-psychologist. Spread over several appointments. And I’ve seen about 8 different neurologists over the years. I’d expect some basic neurological testing but not the cognitive or walking speed tests. The recitation of neurological history gets really tedious after about the fourth or fifth time, so expect that with every new doctor / neurologist.
I can’t see that you’d get to decide whether you are PP or RR (or SP for that matter). Current or recent inflammatory activity shows up on MRI I thought, which would indicate that a person was relapsing or had recently shown some relapsing inflammation. If there isn’t any sign of current or recent relapses, and the person didn’t report previous inflammatory activity followed by remission, then the neuro would presumably diagnose PPMS. A persons preference to be diagnosed as RR wouldn’t come into it.
I suspect that neurologists are currently reluctant to change a diagnosis from RR to SP simply because access to DMDs is governed in the main by a persons diagnosis as RR. And there is always the possibility that a SP diagnosis can be accompanied by relapses and a degree of remission. Certainly my neuro seems to think I am basically RR because there was evidence of inflammation on the last MRI. That may change at my next appointment given that I’ve now pretty much run out of possibilities for DMDs and he’s already said there is quite a degree of disease progression. So a preference for an RR diagnosis rather than SP is a possibility, but a diagnosis of PPMS is not often given without some evidence that it’s correct. But certainly you should check that the neurologist agrees that you do have PPMS.
I would expect some discussion of your current symptoms and potential for drugs to help manage the symptoms if that’s necessary/needed. Also referrals to other specialisms, such as neuro-psychology, urology, and physiotherapy or occupational therapy, depending on your needs. I’ve also had a referral to a neurology-rehabilitation specialist which is really helpful for symptom management. I’ve found he’s brilliant at drug management and ongoing referrals to eg orthotics, wheelchair services, physiotherapy etc. Your neurologist should also point you towards an MS nurse or general neurology nurses (if there’s no MS nurse) for support.
Good luck with the appointment.
Sue
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I go to Salford Royal and am PPMS (or SPMS, depending on how they feel that day) and got none of the tests that Nanajuls got - pretty much a consultation with the neurologist is all I got.
Sorry to be a cynic about the labels, but one of my friends was told she was PPMS when she was in hospital after having complete paralysis of one side of her body. She told me this a year later, as she was driving me to an MS exercise class we attended together. We both walked to the class unaided (although her walking style was a bit odd). Her diagnosis of PPMS was a complete misdiagnosis, never corrected. That’s why I’d advise anyone who gets this diagnosis to think very carefully about whether they’ve ever had any symptom that has improved significantly for a sustained period (I think that’s a month). If they have, they don’t have PPMS.
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