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Question I should ask.

Hi everyone,

i feel like im stalking the forum. Long story short I was diagnosed two weeks ago with FND but also told I’m at risk of developing ms. My mri have been clear but lumbar puncture showed oligoclonal bands and elevated IgG index. I experience many symptoms of ms. The neuroscience manager at my local trust rang me this morning and said she’s sending me to an ms specialist. Can you please give me any ideas of questions I should be asking? I want to make sure that I’m not blind sighted with the science of it all.

Appreciate any any help or wisdom you can offer.

Thanks

Danielle

hi danielle

the consultant will ask you questions, as he or she tries to build a picture of your illness.

you can help by jotting down a kind of timeline of how it all began for you, what symptoms you have had, if they went away, if they remain and so on. approximate dates will be helpful.

it would be a good idea to take someone with you, this person can prompt you if your words dry up.

he or she can also help remember what the specialist says.

if there is anything you don’t understand, make sure you ask for further explanation.

this is your appointment so make the best of it.

carole x

Hi Carole,

dont know what happened last night my reply didn’t post. The neurologist will have my file as my previous consultant who I was under for 4 years has done extensive tests. I’m just worried that he will try to blind sight me like the ignorant consultant I seen two weeks ago did and dismissed everything.

I just want to make sure I’m asking the right questions. My partner will be coming with me to this next appointment thankfully he won’t be afraid to speak.

Hi Danielle

As Carole said, write down what symptoms you’ve had, when they started, how long specific things have lasted, whether any symptoms have hung about, or if things tend to eventually disappear.

Obviously s/he will have your previous notes and test results, but s/he will want to know from you what’s been the history behind the tests. Ie from your perspective, what originally took you to the GP, referred to the (useless) neurologist, sent for tests, etc.

Thankfully you’ve been referred to this MS specialist.

The questions you’ll need to ask are things that you think of between now and then. So start keeping notes of what occurs to you. I should think the primary one is ‘is it possible that I do in fact have MS?’ Or ‘what do you think are the chances that this will become MS?’ Or ‘what is the significance of the positive lumbar puncture?’ ‘And the negative MRI?’

And some things will be just part of the conversation you have with this new doctor. So will depend on what s/he says.

It’s a good thing your partner will be coming to the appointment. Partly so you don’t get flustered and forget half of what you wanted to say, and partly so between you, you’ll remember what is said!

Don’t worry about keeping on coming here and asking questions. We honestly don’t mind however many times you need to ask for help, just sound off or get some sympathy.

Sue

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Hi sue,

again thanks for the reply. Seen my gp this morning and he didn’t accept the ignorant consultant letter thankfully and had kept me on my medication!! The gp has stated over and over that this is above his remit but asked to ask the ms specialist the significance of the oligoclonal bands in the csf, what level where they at and what does this mean in the absence of lesions? He also had to ask me what the diagnosis of FND meant lol! I tried explaining the definition and he likened it to anxiety tried to correct him and say no it’s due to the wiring in the brain. Anyways, he dodged trying to tell me how the letter stated it was functional and psychological yet physiological factors were present in the csf. I also told him what you and I both had found that 80-95% of people don’t show lesions. Sometimes I feel like I’m having to do the job of doctors to try to get as much information as I can.

I took a diary in the last time and ignorant man didn’t even both his backside to look at it but I’ll start keeping a diary again. Thankfully I’ve only to wait 3 weeks before I see the specialist. It’s amazing what complaining can do!

hoping I can get some answers soon xx

80 to 95% of people don’t show lesions??

Yes, I think it’s somewhere here on the research papers or forum. It can take a long time for lesions to appear from what I’ve gathered. But the positive results of oligoclonal bands in the csf from a lumbar puncture can indicate ms.

My neurologist told me that 99% of the time lesions proceed symptoms, not the other way round. The only 80-95% statistic was aware off was that 80-95% if people with ms have o bands in their csf.

Hi sorry maybe that’s where I’m gettung mixed up. My lumbar puncture results are positive for o bands but I don’t have lesions on m mri.