First neuro appt today post dx

Hi people, Got my much anticipated appt today following dx on the 03/12. I’ve got my list of questions: 1. Can I see the scan, where are the lesions and what does that mean? 2. Can I have copy of diagnosis letter? 3. What ms type do I have at present and how severe is it at the moment? 4. What ongoing tests will I have? 5. Am I eligible for dmd’s? 6. Can anything be prescribed for current pain? Does this sound ok to people? Oddly feeling nervous but hopefully I will understand it better after. My OH is coming which will help. Just need to get through work this morning :frowning: Thanks Lorna xx

Hi Lorna

I hope your appointment wet well and you managed to get answers to the excellent questions which you have posted.

I have my follow up appointment in a couple of days and feel very anxious at the moment. I’m not anxious about the appointment, just worried about forgetting to ask the neuro questions which I have had to wait five moths to get answers to.

I would be interested to know how you got on.

Hello Lorna

Sorry I missed your question. I hope the appointment went well.


Hi, It went well. He seems a really good consultant in that he is quite non-committal to things, but I know this is because everything is so unknown. He stated that the number of lesions doesn’t always match the type of symptoms/progression so whilst I can apply to see it, really it wouldn’t show me much. He said given the number of symptoms he is supporting dmd’s and so I need to ‘pick one’ for my ms nurse appt at end of jan. I had my blood test there and then, On a positive he also said he is happy for me to drive and will be telling the DVLA that when they make contact. He has also offered a letter to pass to my work detailing how it will impact on me. Basically he has said try and carry on as normal but don’t get too tired and stressed. I was back at work on Monday and am really struggling with getting up. Plus my back is no better so taking lots of codeine. He said this probably isn’t directly linked to ms, but with my numb feet I have been walking differently and putting pressure of my lower spine (I have arthritis in my lower spine). In all then, quite good. I have some friends who do reiki and so may ask their help with the back. L xx

Hello Lorna

Glad the appointment went well. The neuro is right about the number of lesions not always matching symptoms/progression.

My neuro showed me my scan on his computer but he knows I’m a qualified nurse, so I think it probably made a difference…or he is just that kind of guy lol

I hope things work out for you with the dmds…that means your RRMS then?

Lorna!! you know your the one that as to inform the DVLA don’t you?

Neuro has given you some good advice about taking it easy. Have you asked for help at work Lorna??

I have Psoriatic artthritis, so can sympathise with you on the back pain…not nice.

I’m trained in Reiki, it will be lovely for you…very relaxing.

Take care,

I’m glad it went well. I was diagnosed today and your comment about your neuro saying he is happy for you to drive made me realise that I forgot to ask him about driving despite having written it down, doh! I’ve just printed the DVLA form off and it doesn’t look too bad. My neuro also offered DMDs, weren’t you offered them when you were diagnosed?

Yeah I filled my DVLA form in mid dec. still not heard off them yet but assume they will seek his opinion. When I was dx it was totally out of the blue so he wanted to give me a few weeks just to let it sink in and actually learn what MS is!! ( I had no idea what it was!) My work know and I’m meeting with my manager and HR in the next couple of weeks to see what arrangements they can make. It’s hard because my job is client based but hoping for flexi hours etc and maybe a laptop to work at home one day a week . We shall see :slight_smile: x