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2nd neuro appt and MRI results...

Similar story to many of you here…

Last week I had my first MRI. Today I had a follow-up appointment with my neuro to discuss the results.

Well, the neuro said that there is one small patch of ‘inflammation’ (she didn’t say ‘demyelination’) on the right side of my brain. I can’t quite remember where she said it was now but I think at back near base of skull region? Anyway, she said the area of inflammation matched my symptoms perfectly so that’s the explanation for my symptoms. She said as there is only one she now wants me to have a LP and some eye tests at Addenbrooks hospital. She said the guys there are fab at doing LP’s and will do my eye tests at same time. I presume she means the VEP’s I have been reading about here?

She said that she didn’t feel I would benefit from steroid treatment for this attack as I am almost over it. Still at about 90% recovered, same as when I saw her about a month ago but recovery is good. I am more than happy with that.

She said that this MRI result is more evidence of what we talked about last time (MS) and that a LP will help add more weight to it. She said that they will keep an eye on me over the next two years and see how things go.

I asked if the two Labyrinthitis episodes I had 2 years ago (that she thought may have been misdiagnosed MS attacks) were actually Labyrinthitis episodes and she said yes. I said that’s good news then! :slight_smile: She agreed.

So, I feel that it’s still good news, even though I do have some inflammation in one area of the brain, and it looks even more likely to be MS now, it is still only one patch. I know I can’t get a DX with only one area so that’s why she is ordering LP and VEP’s (?) and I know I have to just carry on for another 2 years and see what happens but I feel it’s good news. At least my brain is not peppered with holes!

I know it means more waiting around in the limboland lounge but that’s fine by me. I know I can’t start any DMD’s without a aDX but I am feeling pretty good right now.

I don’t think it was negative at all. No (ish) news is kinda good news right?

Forgot to add: The inflammation is the same as demyelination? Or am I getting confused here?

Thats a nice upbeat way to come out of it, and while they say forget about it and get on with your life that will be difficult for a while,but the longer you go with nothing drastic happening the more it will fade out of every waking thought.

Yep it does mean a sort of limbo but with luck you could go years without anything happening. Im so pleased you faced your MRI fears so at least you know exactly whats happening in there.With the other tests it means you will have the complete picture.

Onwards and upwards.

Pip

Thanks Pip :slight_smile:

Yes, finger’s crossed nothing else will happen for years. I am glad I had the MRI because when you don’t have facts and figures etc you always assume the worst. I was imagining my brain all diseased and stuff. So one little patch is really good news to me!

Yes, onwards and upwards.

:smiley:

I’m off to bake some chocolate & banana muffins to celebrate. I have a ton of 'nana’s need using up.

midnightmoon, I am pleased you didnt have to wait to long and that you sound so up beat, think that glass half full attitude will help you through. don’t think inflammation is same as demyelination but others may know more, I’m new to all this. I to am awaiting lumber puncture. good luck

Hmm, maybe I should have asked what the inflamation is and what is causing it. So, I know what is/was causing my symptoms (the small inflammation patch in my brain), but what caused the inflammation?

I’m still new t all this too. Sometimes think I am on top of it all and nuderstand and then other times I think I have no clue!

Good luck with your LP too. Im not worried about it. I’ve had two kids and an epidural. At least I won’t be in labour this time! Not keen on the possible monster headache afterwards though. I have suffered enough with migraine for most of my life. I don’t want to induce one.

Hi Midnightmoon x can’t answer your question but just wanted to say I’m glad you have at least moved forward a bit!!! xxxjenxxx

Thanks Jen. Yes, at least it’s a step in the right direction.

How are you doing?

x

Just a quick word of warning, midnightmoon, regarding the LP. Most people recommend you drink loads of caffeine afterwards to avoid the headache, but I see from your posts that you suffer migraine, so if you find you can’t normally tolerate caffeine very well, don’t think you will for the LP! Take it from me, its not pretty! Just keep hydrated, lie down for an hour or two, and if you do get the headache, take your migraine meds (advice given to me when I was admitted to A&E several days after). If it doesn’t clear up after a day ot two, ring the doc, or the ward, as you may need a blood patch, which just seals any leaks which could be causing the headache. (By the way, if you do go down the coke route, it doesn’t have to be full sugar coke, diet is fine, as long as its not decaf! same goes for the coffee, obviously!) The prodedure itself was a doddle. Good luck x

Morning Midnightmoon x I’m a lot better than I was thank you - still nowhere near 100% but getting there slowly but surely!! xxjenxx

midnightmoon sounds like me you have proactive consultant let us now when your having LP. Hunny I wondered about the diet option as I’m a diabetic so was going to get strong coffee in, however ours is a caffeine free household so I wondered how my head might respond to the coffee! will gallons of water have same effect?

Thanks for the tips. I do suffer migraine and I don’t do caffeine. I drink decaf coffee and never drink fizzy. I have recently had a hair strand test for food intolerances and top of the list was coffee followed by any fizzy drinks - even carbonated water! I’m still trying to get my head around it and have not cut out decaf coffee yet. I have a headache today and just hope it doesn’t turn into a migraine. Have taken panadol already. The trouble with me is I am a chocoholic and cannot give it up no matter how many migraine it gives me.

The thing that concerns me is not being able to lay down and take it easy for long because I am on my own with two kids and no family nearby. I run my household single-handedly. My kids are 12 and 14, so not little ones, but they are boys…need I say more? LOL

My youngest is pretty helpful but he has ADHD and I am often having to break up fights. I just hope they can behave for a few hours for me. I will explain this to them nearer the time. Am hoping their dad might be able to help or take them off my hands for a few hours.

Not really sure if I want to be drinking caffeinated coke and coffee after a LP. Will ask them at Addenbrooks on the day.

Glad you’re feeling a little better Jen. Even if it is a slow process. Finger’s crossed it continues.

I’ve just phoned the MS Society helpline because I was wanting this cleared up as to whether ‘inflammation’ was different to ‘demylenation’. I have just been told, although it was worded differently, it is actually the same thing.

Obviously one area is not enough for DX and now other tests have been ordered. LP and VEP’s next.

Cocochannel, I was told that keeping hydrated was the most important thing, but if you CAN do caffiene, that seems to be the icing on the cake. Speak to your doc and see what they recommend for you. Mine is a caffiene free household too, but I thought I’d give it a go, fearing the dreaded headache, but ended up in hospital as a result! I’m certainly NOT saying that will happen to anyone else! I’ve got some strange stuff going on, but its just a word of caution xx