What questions do I need to ask?

I have a neurology appointment on 23rd January with my consultant to discuss treatment options.

Brief history, 3 years ago I lost all feeling in left arm and have had permanent pins and needles in that arm since then. On numerous GP visits being referred for Carpal Tunnel syndrome and having physio the pins and needles did not go away and I was finally referred to neuro who sent me for an MRI, full spine and brain.

Following the MRI I was diagnosed with Clinically Isolated Syndrome, with lesions on cervical spine and in brain and they confirmed that the nerve supplying my arm has “short circuited” so I will never get the feeling back. Prescribed Amytriptyline or Gabapentin (depending which one I got on best with) and booked in for another MRI 6 months after the first.

The second MRI shows a new lesion in the brain (contract dye used) and I have been invited back to discuss this. It was mentioned previously about DMD injections.

What I would find really helpful is that you can reply with questions that I should be asking, I am trying to be as prepared as possible.

I am fully expecting the neuro to confirm a diagnosis of MS but I could be pleasantly surprised!

Thanks R

Hello and welcome :slight_smile:

If you’ve been invited in to discuss treatment options, then a diagnosis is almost a certainty - and I say “almost” because the only other obvious reason that I can think of is that the appointment wording is a mistake!

What I suggest you do is have a look at the msdecisions website. It has info on all the DMDs and will no doubt give you loads of ideas on what you should be asking about. There’s no “right” decision about DMDs. They all have their pros and cons, so it’s a matter of deciding which will suit you best. A few things that weren’t on the site last time I looked: there are two strengths of Rebif (22mcg and 44mcg); Rebif 44mcg gets the best clinical trial results of all of the injectables; clinical trials suggest that the interferons slow cognitive decline; Copaxone gets to work very quickly; Avonex is the slowest to get to full effectiveness, but may be the best at slowing progression. Neuros aren’t supposed to recommend anything, but yours may have some suggestions.

I guess you better also be prepared for them saying that they wanted to see you about something completely different though!

The whole MS thing sucks of course, but having a neuro who is on the ball enough to organise an MRI after 6 months and then get a patient straight onto a DMD is the kind of neuro that I seriously approve of!

I hope it goes well.

Karen x

PS Nearly forgot. One of the critical things to get from your appointment is the contact details of your MS nurse. They can be worth their weight in gold!

Thank you, always nice to be pointed in the right direction, it’s a complete minefield the amount of sites/forums.

Just to clarify, am I right in thinking that as I have multiple lesions in 2 separate areas that qualifies the space criteria, and the fact that the second MRI shows up new lesions forming and I have had additional symptoms that would qualify the time criteria?

All other possible diagnoses have been ruled out by other tests.

Pretty much.

The 2 separate areas bit is more complicated because they are pretty specific though. The four areas that are typical of MS are periventricular (which means next to the ventricles - the “lakes” of CSF in the middle of the brain), juxtacortical (next to the cortex, the outer layers of the brain), infratentorial (the brain stem and cerebellum) and the spinal cord. So having 6 lesions in the brain stem and cerebellum wouldn’t qualify as dissemination in space, but a single one there plus a single one next to a ventricle would.

Kx

Thanks again

Well I think I have my list ready for the consultant on Wednesday, my husband is coming with me and we have both taken the Thursday off work too to mull over what she tells me at the appointment. We are fully expecting the diagnosis of MS and I’m not sure that I will take it as well as I think I’m going to. I suppose you can’t really prepare yourself when you finally get told that.

I have a benefits package at work where every year in January we can choose our benefits for the following year at a cost to us but much cheaper. 4 years ago I could have chosen 4 x my annual salary for a critical illness policy at £6 per month taken at source. I thought “that’ll never happen to me” and didn’t elect that benefit. I’ve heard the same thing from my staff at this election period and I’ve used myself as an example of why they should take that cover out. Kicking myself about it especially as I work in the insurance industry and should know better!

:frowning: about the cover. I suspect most people do the same thing - we never do expect bad things to happen to us :frowning:

Good luck on Wed.

Kx