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FIRST APPOINTMENT POST DIAGNOSIS-WHAT TO ASK?

Hi,

I was diagnosed 5 weeks ago with relapsing remitting MS. Complained to PALs as hadn’t had appointment with MS neuro arranged and NO support from their services following diagnosis. Low and behold I’ve an appointment tomorrow!

Any tips on what to ask?

E xxx

Hi there! As you have received a formal diagnosis, I assume you have already seen a Neuro Consultant. Based on my presentation and MRI scan, I already knew before seeing the nurse, what treatment I was looking at. The MS Nurse will run through all the treatment options available to you and you decide which way to go. I too was diagnosed about 5 weeks ago and I didn’t arrive at the appointment with any questions, because, I think, you don’t know what questions to ask, when you don’t know anything to begin with. Once you arrive at the appointment, just relax and listen first of all, because you will probably be overloaded initially with lots of information. You will then find that questions will then naturally pop into your head. I did ask 1) Do I have to notify anybody ie.DVLA?, 2) Would I qualify for a Disability Badge for driving. Best of luck tomorrow!

Nazra,

I agree with you that there is no harm in asking questions if you need too, however being confrontational and accusatory in your meetings will not encourage any Neuro or health proffesional to do their upmost for you. Respect is a two way thing in order to get it you must be willing to give it.

Laura yep your right im going to have to tone it down a bit even though i really dislike their way of practice.

To address the original posters question:

Ask about referred to the MS team if you have not been seen already. Ask about dmd’s (if this an option for you?) and like anon said - just listen!

Whatever you do decide to ask - write it down - nothing worse than having questions on the wrong side of the door! Best of luck, Laura x

Concentrating on what anon said - sorry to hear about your diagnosis. I’m glad you’ve got an appointment tomorrow. There are several DMD choices and it depends on what they offer you. My suggestion would be once they’ve given you the options of DMD’s make sure you research each one and find the right one for you. The questions to ask generally would be what options of treatment you have on offer and if they think that there is one option that they feel is better for you- generally they won’t advise but sometimes they point you in a direction of one DMD over another. The next question to ask (you may already know the answers to this) but have they tested your vitamin d and vitamin b12 levels and is there deficiencies in either of these - if so should they be starting you on medication for them. I hope your appointment goes well tomorrow and wish you the best of luck. X

Hello, Welcome to the forum and sorry for your diagnosis. It must have been a shock for you and you are in the very early days so be kind to yourself as you will probably experience the full range of emotions on a daily basis. I was diagnosed in February after many many years of being unwell. You could ask what their plan is for you, I.e. treatments, Physio etc. I asked mine if he could approximate when mine started from the scans and he said I’d had it for many years. That was a question directly related to my situation and I think that could be a good starting point. Just take time to think about what you would like to know at this point. It is nicer to have a one to one explanation about the most important questions for you at the moment, rather than all the information you can download/read as it isn’t personal to you. MS is as individual as the person who has it. Good luck and I’m happy to answer any questions you may have about my experiences so far. Sam x

Hi Anon

I am still awaiting dx but find that the advice offered from Tina and the gang is so very useful and makes one feel they are not alone. Good luck with the appointment and hope you gain knowledge and insight into your MS.

Nazra I think it is entirely inappropriate to hijack anon’s post to further your own politics and vent your own fury at your treatment or lack of it.

Dinks

Mr dinky. I didnt start it. Goodness.

Hi Nazra - not being funny but why don’t you start a new thread now so Anon can get some constructive and supportive posts She’s just been diagnosed with MS which is pretty daunting and she really could do without an argument about the pro’s & con’s of the NHS

xxjenxx

Hope you’re appt went ok today anon and you got some questions answered A

I completely agree with Jen. It’s thoughtless hijacking somebody elses post when they are actually in want of help.

I hope your appointment went well anon and you got the information and support you need.

Reemz

X

Hope all went well and you got some answers x