Guest post: My annual visit

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Just recently I had my annual appointment with the MS consultant. He said it could only last 15 minutes. He did apologise for such a brief slot. Even so I couldn’t help but feel short changed. I could only discuss my 3 worst symptoms. Here is my own version of events at the MS review.

He started

“Has it got worse”?

I thought to myself “This is a bit of a stupid question to ask anybody with advanced multiple sclerosis. When did you last hear of someone like me getting any better? There is no magic bullet that anyone can possibly offer me. So when someone asks me that question then there is only one answer.”

So I said, “Yes I am worse than I was a year ago. Where you want me to start”?

He looks at me very sympathetically and asaks “Do you mean your existing symptoms are getting worse or that you are noticing new symptoms”?

“Well actually I have noticed both over the last few months”.

“Briefly everything just takes me so much longer and it requires so much more concentration. Worst of all I have to stop and regroup much more frequently”.

I pause and gather my thoughts. “It takes me over an hour to get washed, dressed and out of the bedroom every morning. That includes paraphernalia like putting on my FES and doing a few simple exercises”.

“So”, he thinks aloud to himself “that is seven hours every week and you haven’t even left the bedroom.” He then adds “I guess it is the same going to bed in the evening”.

“Well about half as long”. As an excuse I added, “I can only take my clothes off and on while I am sitting down on the bed”.

I tell him. “The disease has moved on very slowly so I have developed my own workarounds. Yes I do realise that I am disabled but I don’t see myself as a disabled person”. Note to self; I am being very positive.

“Ah very good but have you noticed anything new over the last year”?

My questions

“Yes, I can no longer write more than a few words with a pen and even then it’s very childish plus I’m clumsier. Twirling spaghetti round a fork is very difficult” I add.

I continue, “The grip with my left hand is getting much weaker. As I am left handed this is a massive inconvenience. So now I’m even learning a new skill. I have to use a corkscrew as if I’m right handed”. Another note to self, more positivity.

He recommends I talk to an OT who will suggest some exercises to maintain the strength of my hand. He then pops the question “What symptom relief drugs are you taking”? I tell him what I take.

My final question, “I am having problems with my bowels, I’m getting constipated but I am eating 2 or 3 stewed prunes a day”

His reply is that I must improve my bowel hygiene and suggests a certain laxative and stop eating the prunes.

Fifteen minutes have whizzed by and it’s the end of appointment. I could go on for hours telling him more things that are troubling me but these issues must wait for a year. No doubt there will be more new problems. Roll on the next appointment in January 2020.

Next appointment will be by ‘phone, this will save on travel time, a whopping 5 hours and eliminate fatigue.

Do you think 15 minutes once a year is long enough for an appointment with your MS consultant? Have you thought of sending an email to your consultant on the state of your MS and drugs you take before the annual appointment?

CoI : None

By Patrick Burke

Patrick was diagnosed with RRMS in 1995 but believes his symptoms started in 1972. The disease turned into SPMS in about 1999/2000. He was forced to take medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of his MS since retirement and it describes a wide range of objects that are readily available for disabled people to improve their quality of life. Patrick is also a member of the Barts MS Advisory Group.

About the author

Rebecca Aldam

3 comments

  • I know Patrick has had treatments which have I guess necessitated follow up appointments . But quite frankly with SPMS I don’t feel the need for any consultations or consultant ..seems a complete waste of my time and theirs. I have an ms nurse and if I need any advice I would phone her. I don’t even bother to have annual appointments with her. If there were some DMTs available for me that would be a different matter completely.

    • We offer our patients with active SPMS off-label cladribine. In the past we used mitoxantrone. In the near future, we may have siponimod. There are DMTs for SPMS.

  • Diagnosed in June 2015, I saw my neuro once privately in the Autumn (so I could actually get to see him !) and then once in Feb 2016 with an nhs appointment. I left that second appointment in floods of tears because of his paternalistic, unsympathetic and downright patronising attitude. He didn’t want to listen to me or discuss a treatment plan. He “told” me to try Tecfidera. This was not a discussion.

    A month later I saw the Panorama programme about the Sheffield trial of HSCT and started researching. Now 18 months post HSCT, I have no intention of going back to see this man. I may be “under his care” but he missed the lecture on bedside manner.

By Rebecca Aldam

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