Last reply 1 year ago
First appointment

Hi, I was diagnosed with RRMS in​ March and have got my first appointment with the MS clinic next week.

I found a list of things to discuss covering MS symptoms and general health. I went through it and filled in history and present symptoms. I have also been recording symptoms and have written out some questions I would like to ask to do with when I will be eligible for treatment and if I would be able to have any kind of therapy regarding my numbness and tingles and things.

Is there anything you would advise about a first appointment after diagnosis?

People have asked me if I’m going to take anyone with me but there isn’t anyone I would immediately expect to take along with me, do other people go alone too?

I’m quite nervous!

Thanks for any advice!

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
1 year ago

@nicecupoftea , you seem to have done a fair amount of preparation for this visit. Don’t forget a pen/pencil, so that you can tick items off as you go.

It’s normally recommended to be accompanied, as four ears are better than two.

You should be introduced/notified of your MS Nurse’s details. This is a specialist nurse, that only looks after MS patients. They’ll be your first point of contact for all things MS.

So, you can always ask questions after the visit too.


vixen
1 year ago

Hi there, I only got diagnosed in January and saw an MS nurse at a clinic almost immediately. I actually went on my own. It was a DMD clinic. There were four newly diagnosed there, two had taken partners. This first meeting was at the time, the info about the various drugs and seemed like it was just too much info. I decided to give myself at least another month to think about how I was feeling with the diagnosis and by then I felt ready to take the plunge with Tecfidera which, so far is going great. My first meeting alone with the nurse was great; it’s just as much about them seeing how you are coping with the diagnosis. So we probably asked each other the same amount of questions.

I must say, I’ve done squillions of research since and have found this to be the best, honest and open website so far. It’s a highly supportive community. The service in my borough is great, so if I call my MS nurse with a query, she can go straight to the consultant. Good luck @nicecupoftea!


lilbird
1 year ago

Hi @nicecupoftea

Sounds like you are well on top of the situation 😊 all I’d add is take some notes while you’re there, especially if you’re going by yourself, so that when all the things you knew you’d definitely remember have evaporated from your brain you’ve got something to refer back to & anything that you thought made sense at the time but suddenly seems confusing you can look it up. Of course I can only speak with reference to my addled brain! 😉 Best of luck & don’t be nervous, it’s all very friendly & positive in my experience.


melissa-g
1 year ago

Personally I recommend taking someone with you at first, especially if you’re nervous! A second set of ears can be helpful, but if there isn’t anyone you’d feel comfortable bringing I second the idea of taking notes! In my experience they can really rush you and not take the time to thouroughly explain things, so asking questions is key, and taking notes would be a great help to remember it all!


dianevh
1 year ago

I was diagnosed just a couple weeks ago. My appt. is at the end of the month. I don’t think either of us should go alone, too much information to take in yourself, as them to take notes so they don’t have to soak it all in either. That’s my plan anyway. I am sure you have a loved one that wants to be there for you. @nicecupoftea


katy79
1 year ago

@nicecupoftea – sounds like you are well prepared!

Taking a list of the things you want to cover is a good idea – don’t be shy about using it to make sure you get all your questions s answered. Mine fell into the following buckets:

– your test results and what they mean
– your on- going symptoms and what to do to improve them (drugs, physiology, complimentary therapies etc)
– DMTs -what is available (and what is not and why) and what that means for you – and timing/ process for access to your chosen DMT. Also, trials you might be eligible for (if you are interested).
– other things you should be doing to keep yourself well (supplements, diet, exercise, rest etc)
– any questions you may have about other complimentary/ non licensed things people take and you are unsure about (e.g. LDN/ Biotin etc)
– any questions about things in your lifestyle that you are unsure about (taking holidays in hot countries, having children etc)
– what do to if you think you are having a relapse
– legal stuff – insurance / contacting the DVLA etc.

I took my boyfriend with me as an extra set of ears and so he understood what I was mithering on about when I needed to dissect the appointment at home – but if you are calm and prepared you should be ok on your own.

Take care and good luck – and don’t let yourself get rushed out if you still have questions!

K


kateybash
1 year ago

Katy79, that is an amazing set of questions and great food for thought. I am awaiting diagnosis, in limbo land and anxious right now. Has numerous brain lesions and have recently had visual and lumbar puncture tests. My neuro advised that she would call me tomorrow. Don’t know what to think … probably best not to at all!! I wondered what questions to ask also if it does go down the MS route. Thanks for posting your advice.
Kate


potter
1 year ago

There was some kind of miscommunication when I went to my first appointment after diagnosis. My neuro called me on the phone to tell me I had MS and set up a appt in a month. When I got to the appointment he was expecting me to have picked out a treatment drug. I hadn’t done any research on them, I thought he was the doctor he’ll prescribe something. So our first meeting was short he sent me home to do my research and find out which drug my insurance would pay for. The list was short but they were paying for Rebif which was a fairly new drug at the time. I chose Rebif, I thought it was a little bit more effective than Copaxone. I change to Tecfidera after five years because of skin rejection. Love my Tec, I have been on it for 4 years now. Potter


nicecupoftea
1 year ago

Thanks @stumbler, @vixen, @lilbird, @melissa-g, @dianevh, @potter it does help to know sort of what is going to happen! Thanks for sharing your experiences and advice! It was a bit rushed to be honest, not that the nurse was rude or anything but clearly busy.

And thanks @katy79 I really liked your questions, really useful, thanks for that!

I had the appointment this morning. I did manage to find a friend to come with me and then we spent some time chatting about it afterwards which I think helped lower the anxiety before the appointment and then figure stuff out afterwards. I ended up giving the nurse my list of symptoms and history etc. for her to add to my file. She said that most of it is like background things that I just have to live with but she has also referred me to see an MS OT in case there is anything they can suggest, and orthoptist because I have had weird visual things in the past (but not since diagnosis). She said I would have to wait and see how long between relapses before even talking about DMT and that they will be looking at it as a blank slate so to forget about any previous symptoms, and that some people just go to the neurologist appointments once a year and never start treatment because they never experience any relapses. I thought that was a bit weird given everything I’ve read said to start treatment ASAP and it is still causing damage even without symptoms? I asked her that questions and she said that they go off symptoms and not MRI scans.


stumbler
1 year ago

@nicecupoftea , that’s a very conservative approach. You have been given a diagnosis of MS, which means that you have experienced two relapses or episodes already.

Here are the ABN guidelines for prescribing a Disease Modifying Treatment :-

http://pn.bmj.com/content/15/4/273

Have a read through and see whether you feel you are being managed correctly.

How have things been left with you? Do you have a follow-up appointment or contact numbers?


nicecupoftea
1 year ago

Hi @stumbler, thanks, I just gave it a read.

I think the sticking point is that the neuro is taking it that I had a relapse about 3 years ago. However, he is under that impression because that is when I went to the GP for visual disturbances symptoms and was sent for a CT scan. I have had visual disturbances since but because the GP said it was probably migraine I didn’t go back when I had that symptom but recorded it. I have recorded everything in that time but the neuro wouldn’t look at it when I went to my first appointment. It was included in the info I gave the nurse today which she said she’d give to him so perhaps he will revise his decision with that new info? If he accepts that info I will have had 1-2 relapses a year and that would possibly change his opinion?

I will be seeing the neuro every year and the ms nurses every 6 months as standard, and she gave me a number to call if I think I’m having a relapse and said the questions they’d be asking is; is it a new symptom/return of an old symptom that had otherwise gone away, am I stressed or have any infection which the GP will have to check, i.e. is there another possible cause, did it come on over a couple of days and peak and stay for a duration and then start to go away.


potter
1 year ago

I think you should get a second opinion, my neuro didn’t want to wait for another relapse and I was diagnosed 10 years ago. You could have your records transferred over to another neuro, it may take a while but it is better than waiting a year. Doctors can have different approaches and beliefs, when my son was young he was having trouble completing assignments in school even though he had a high IQ. We tried every thing suggested to us, then we watched a show on ADD. We knew what the problem was, I took my son to a psychiatrist and he said my son was one of worse cases he had seen. He said my son needed a complete physical before he could prescribe him medicine. When we told our GP why he needed a physical he gave me a lecture about ADD not being real, he didn’t believe in it. He thought we needed to discipline him more. We went ahead with it and my sons grades went from failure to top grades in three months. My son still struggles with ADD, his wife also is ADD so they are a perfect match. Potter


stumbler
1 year ago

@nicecupoftea , I tend to agree with @potter, a second opinion would be a good idea. See your GP and discuss what’s gone on with them.

You have been diagnosed with a progressive, degenerative condition, so steps should be taken to slowdown the impact, i.e. prescribe a DMT.

I agree with a lot of what the Nurse said, as a relapse is defined as a new symptom, which lasts for at least 24 hours But, if you wait for it to go away, then your relapse has passed…………

This is the reason why we need to get clued up on MS and what to expect. This would allow us to have an active discussion with the medical professionals, rather than get talked at. We have to be our own advocate, to ensure we are listened to, and treated properly.


nicecupoftea
1 year ago

@potter and @stumbler – I’m at the Walton Centre in Liverpool, I had always assumed it was a good place to be, I guess it can still depend on the doctor?

How long would you wait before going to the nurse if you think it’s a relapse? 24 hours?

With the info I gave the nurse, should I ring up to make sure the neuro reads it or something to see if it changes his decision?

What would I say to he GP? That I think the neuro is being too conservative in DMT?


stumbler
1 year ago

@nicecupoftea , MS is different for each person. And, it seems Doctors are too!

There’s a good definition of a relapse here, https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms . So, yes, 24 hours is the minimum wait time before calling.

There’s no harm in calling the MS Nurse. They should be well aware that first appointments are difficult and clarification will be required. So, ask why no DMT is being discussed as you’ve got a formal diagnosis.

Use your GP as a final resort. Just tell them what happened and why you’re confused by the situation.


katy79
1 year ago

@nicecupoftea

So much of that sounds at odds to my own diagnosis experience. I had my first MRI in March 2016 which showed multiple lesions including some which were active. My clinical symptoms were numb toes. This was enough to meet the RRMS macdonald diagnosis criteria. I had a second MRI in June 2016 which showed one new lesion. I’d had no new symptoms. This MRI evidence was enough to label me active RRMS and qualify me for treatment (I received Lem in August 2016). My neuro was prepared to consider that an episode of vertigo in July 2015 may have been an earlier relapses due to a lesion shown in the MRI on my brain stem. At the time this was diagnosed and successfully treated as inner ear vertigo (bppv).

So my own quick diagnosis was a product of MRI evidence rather than repeated clinical releases and medical neuro was prepared to take on board my clinical history. There are a number of people I have come across on here/ the lemtrada boards who have been diagnosed in a similar way.

On the basis of “time is brain” I may be minded to push for a second opinion if I was you- giving the ABN guidelines as reason.

Good luck – Both if you decide to stick or twist!

Katy x


potter
1 year ago

Whether it is your GP, MS nurse or neuro tell them you would like to take a more agressive approach to your treatment. That should be clear enough for them. Potter

Post Comment

You must be logged in to reply to this topic.