Hi All, just joined this forum yesterday. Newly diagnosed. Got letter couple of weeks ago following an mri, I have an appointment beginning December and would really like to ask what are the key questions I need to be asking? If I’m honest I’m absolutely terrified of this diagnosis and find myself breaking down in tears and keen to get this appointment over with but worried I’ll miss something important to ask. Want to take a list. Goint to RVI Newcastle. Thank you in advance for any help
Hello
I’m so sorry you’ve got the qualifications to join us here! There’s no doubt, an MS diagnosis is cr@p and your poor head must be full of questions, fears, worries and a few more questions on top of that.
What I’d expect from an initial appointment is possibly a neurological examination, some explanation as to why the neurologist has diagnosed MS from the tests you’ve had and probably a conversation about disease modifying drugs.
You haven’t said, but initially at least, most people are diagnosed with relapsing remitting MS. This is where you have periods of symptoms followed by periods of either complete or partial recovery. About 85% of people with MS have this variety (the others have a progressive type).
You are likely to have a conversation about which kind of disease modifying drug you would best be suited to. This is a useful guide so you have some idea of what you’ll be encountering: https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
The chances are you won’t have to ask about these, as the neurologist would automatically discuss them.
What you might want to keep in your mind are any symptoms that you have, you could ask if there are drugs you could have for stiffness or spasms, for fatigue, for pain (things like pins and needles form part of the spectrum of ‘pain’).
You should also ask for the contact details of an MS nurse if you’re not automatically provided with them.
Meanwhile, if you have questions about MS, try not to randomly Google, look on this site (the tab marked About MS), or the MS Trust (type the issue you want to know about and MS Trust into your browser).
Obviously, you can ask us, the people on this forum have experienced the whole panoply of symptoms. Just keep in mind that no ones MS is the same as anyone else’s, we are all individual even though some of our symptoms are the same.
Best of luck
Sue
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Hello SCA, of course you`re upset and breaking down in tears. I felt just the same way back in 1999 when it was suggested I had MS too.
As Sue says, most people will start with RRMS…where attacks happen and a variety of symptoms happen, then things quieten down for a period of remission.
But like I said, I started with PPMS and that is where symptoms happen and disability ensues over time, with no let up.
Hopefully you dont have that form. However your neuro will determine by your results and symptoms, as to which type of MS you have. If appropriate, he/she will talk to you about DMDs…disease modifying drugs.
There is quite a wide variety of these and some people do well on some and not so well on others.
There isnt really anything to be frightened of by your first appointment. But it is easy to forget or get muddled by what is said, so take notes and dont be rushed.
Let us know how it goes
Boudsx
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Thank you both, I am nervous as like you both intimated I hope its RRMS but I’ll hopefully find out at this appointment. I’ll check out your link too about medications, the neurologist did say in his letter to check the information out re DMDs. I’ll take a notepad. Thank you again, I’ve only just joined this forum but already feel the support helping. Sophie x
Hi Sophie,
Another newbie, just welcomed Woody too.
Sorry you’ve been diagnosed but glad you found us. Before diagnosis ans newly diagnosed forum is good too.
I know people who go to Newcastle RVI, they think the neurology dept is great. Geordies will put you at ease!
Hope your appointment goes OK and yes, take notes and someone with you if possible. It’s been proved you only hear part of what is said, especially as it’s quite a scary time.
Look after yourself.
Jen
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