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Likely to be diagnosed today - what questions to ask....

Hi everyone,

I have an appointment with my neurologist at 8pm tonight, where it’s likely I will get my diagnosis of MS. Are there any questions I should ask, that you perhaps you wished you’d asked?

Thanks

Stardust x

Hi Stardust, I would ask if they know what type you have… although maybe you already know or have a good idea anyway. If it’s RRMS, ask what DMDs you can have.

Ask if you can have contact details of the MS nurse.

If you think physio could help with your walking, ask for a referal.

Make sure they are going to write to your GP with confirmation of dx.

Really I would think that’s all really. You will probably just want to take in the information.

As you know, MS is different for everyone, so neuro will not know how your MS will progress. Tempting to ask but they can’t really answer that one.

Are you going with someone? Helps because they can remember stuff that you might forget and nice to have someone to talk to afterwards… shoulder to cry on… although if you have been in limbo and are expecting it your first emotion might be relief. Expect a bit of a rollercoaster of emotions… from relief to shock.

If by chance they cannot dx yet, ask what will happen next.

Good luck love. I knew I had MS when I was told, but hearing it in words still came as a shock. I think I had sort of convinced myself that because I was sure it was MS then it probably wouldn’t be (some sort of twisted logic there!)

Let us know what happens.

Thinking of you,

Pat x

thank you so much Pat - right I’m off to the hospital! I’ll let you know how it goes! xx

Good luck Sam x

Good luck x x

Hope everything going/went ok x

How did it go? Are you ok?

Pip

Hope you are OK this morning x

Yes Stardust are you ok? Let us know when you come on the board.

Pat x

Hi Stardust, I hope your appointment went well and you are okay this morning. I Keep checking to see if you have posted (not stalking, I promise!) Sam x

You know everyone on here will be with you, behind you and around you no matter what the outcome was.

Pip

Hope you are ik Stardust! x

I’ve probably missed you but the most important thing to ask is “have they got an MS Nurse; how can I contact them”?

George

Good luck with the appointment. We’re here for you.

Reemz

X

Hi hun. So how did it go? Not seen you here today yet. Hope you are ok.

luv Pollx

Thanks so much to you all! Well… I don’t know if I’m coming or going! My LP results were clear, much to the surprise of my neurologist. I didn’t have the banding indicative of MS nor a high white blood cell count. He says I’m unusual… Apparently you can still have MS without the banding and is referring me to a MS specialist- however apparently I now only have a 5-7% chance of a MS diagnosis. He has ordered a MRI (second one) to look into the numbness I have and will let me know his next course of action following this. I am perplexed to say the least. From the last conversation I had with him he had hold me the LP was pretty much a formality, and was performing it because I’d had two relapses in less then two years. I now have absolutely no idea as to what is going on :frowning: Xx

Ooops I accidentally posted just then as anon- silly iPhone !

Hey Stardust

My MRI 2 MRI’s came back with non-specific sub-cortical lesions (not classic of MS) and I haven’t had an LP or VEP. When I saw my neuro for second opinion last week he said that we could do LP but it may not show anything if the MRI isn’t showing anything much. Not sure how true this is.

Interesting isn’t it. I wonder how many people intially have a negative LP but do end up having positive on repeating. Also I wonder whether it matters when the tests are done. If you’re not having anew episode does that mean there’s less likely chance having a positive LP?

My neuro felt the symptoms and problems I have fit with MS despite my first and most recent MRI showing no change and has referred me for an opinion with the MS specialist now. I guess its not a predictable disease and not only that its different for everyone.

Reemz

X

So could we have clear MRI & LP but still have MS ? I’m totally new to this & haven’t had my MRI yet but Neuro thinks my symptoms are indicative but who knows then ?

Hope you get on well when you see the MS specialist x

Sorry to hear that Stardust. Extremely frustrating for you. Some people do get dx with a negative LP and the MS specialist will be able to explain better (also Rizzo when she’s back from her holiday). Some people get a ‘probable MS’ dx or a ‘possible MS’ dx until they can be sure.

To answer Reemz question about bands not showing when MS isn’t active… no this is not the case. Once you have the bands showing on an LP you will always have them no matter how MS is affecting you. Once you’ve got them, you’ve got them for life. However I think it’s possible for bands to show on a later LP (which is what we’re hoping for with Poll).

Stardust I know you must feel very down about this right now but remember that the neuro has not dismissed you and is referring to an MS specialist… and by ordering a 2nd MRI shows they are really trying to find out what’s going on with you.

They of course would never want to give a firm dx without being 100% sure and it’s unfortunate that the neuro led you to believe you would get a dx from the LP.

Hang on in their love. I know limbo land is hell and worse for you as you really were expecting a dx.

(((((((((((((((((((((((((hugs)))))))))))))))))))))

Pat x