[b]Hi Everyone - Optic Neuritis and MRI with three "Spo

Coastal · Getting to Know You... Joined: May 09, 2008 Posts: 13

Hi guys,

I'm a Brit guy who has just come through Optic Neuritis ( diagnosis and then follow up MRI.) Like a lot of folks I'm now confused - not scared but feeling a weird feeling of "so this is what it feels like to be getting life-changing medical information."

As I said, the ON was diagnosed by an Opthmologist . I then went to a Neurologist and he recommended an MRI. I had the MRI and went back to him - this time he was clearly in a rush or something and phoned the MRI people to find out the result which he relayed to me. I didn't see the scan images and before I knew it I was back in my car!

Apparently I have two "spots" above the "tent" of my brain and one in my "balance apparatus." ( Is this the cerebellum???) He said he couln't DX MS today because I'd need about five of these spots plus the clinical stuff which by the way seems to be the ON and maybe even a bout of Sciatica about four years ago which might be significant hew says. ) He said the outcome was probably as "good as I could expect that day" but that there was a tendency towards MS because of the ON and an MRI that's not clear.

He said I wouldn't need to make another appointment right now as no treatment is necessary ( ON has improved) and that I'd maybe never see him again!

Suddenly I'm driving home somewhat stunned and wishing I'd asked x, y, and z.

When I got home I rang his PA to ask for the scan images to be posted along with the actual narrative from the consultant Radio. I might even post the narrative up here if I get it.

I'm a pragmatic guy. I just feel he didn't want to cause me huge concerns by going into detail around where these spots were, what they might affect ( cognition etc.) Since I'm pretty OK maybe he thinks the next occurence of something will be time enough to get to the next level. I don't know. I feel ( like many people) I might sort of "half" have MS and while the Neuro was very pleasant he too wasn't painting a "don't worry you're fine" picture. He was hard to read - on reflection I think he thinks i will be Dxd in the future and maybe even thought I even knew this too! ( Talk about dancing around an issue!)

Anyway, I feel OK but would like to know for sure, and that will only happen by 1. a second opinion or 2. another clinical evidence or maybe another couple of lesions or something.

So...I suppose I've just joined your club.

God bless you all

Coastal

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1883

hey there coastal it sure is a frustrating time!! welcome to the club :S

a lot of ppl have spots on their brains, and never notice any issues, and don't get diagnosed with ms because nothing brings them to the notice of the people running the big magnet scanners.

but, when you get a presenting symptom like ON - which is statistically associated with ms - then of course they will expect to see those lesions so they scan you. for sure, when they're looking for ms they'll want to see more than 5 spots. they should be looking at your spine too.

as far as the wait and see approach, i thoroughly disagree with that. maybe you never will need to see him again, and i really hope that is going to be the case for you... but now is the time for all good men to come to the aid of the party. you can do a lot to help reduce your chances of a future unpleasant dx!

Coastal · Getting to Know You... Joined: May 09, 2008 Posts: 13

Hi Jimmylegs & thanks!

I did actually have a CS Scan also which I think was OK. It was the brain one that showed the spots.

Appreciate your reply - thanks again

Punchy · Posted: Sat May 10, 2008 7:41 pm Post subject:

Best of luck Coastal, and welcome to wonderful world of patient self-advocacy. Confused

As for the balancing apparatus - he could also have meant your brain stem, which receives signals from the ear.

This forum is a really great resource for newly diagnosed or purgatory.

Coastal · Getting to Know You... Joined: May 09, 2008 Posts: 13

Thanks Punchy - good to know there are good folks out there who know how weird these feelings are. I appreciate your encouragement!

MrsGeorge · Family Elder Joined: Dec 11, 2007 Posts: 180

Hi Coastal - good to see another Brit on here! Well done you for getting your results so fast it took me over 3 months from scan to results! Gotta love the nhs! I was dx on 17th April this year.

Unfortunately the nhs loves the wait & see approach. I started with 1 incident of ON - and when i saw a neuro they wouldn't even do an MRi - they didn't want to know yet. I guess all I would say to you is if you have any more probs or symptoms write it all down and then keep hassling. Now you have a neuro at least you have someone to bother. I had to have a fairly big (to me) relapse on top of the ON and a second bout of ON before I got a dx.

Also worth noting that the nhs does bugger-all about ON regardless of how early they catch it.

Keep pushing doors and I hope you get some answers soon.

If you have any questions about the experience of getting dx / treatment via the nhs I can tell you what I know / have experienced but unfortunately have little positive to say (sorry to be a skeptical cow).

All the best

Coastal · Getting to Know You... Joined: May 09, 2008 Posts: 13

Hi Mrs G!

Yes - nice to meet you too. Our cousins across the Atlantic have a much more responsive system and network - though many still suffer from the "human factor" in the medical profession. They've been a great encouragement and I'm sure you find that too.

I haven't got BUPA but I do have a work scheme called Beneden ( Friendly society) which is GREAT - thats how I got Neuro and MRI so quickly. They fund up to £1000 towards getting to the bottom of the ON. That's almost gone though!If you're self funding you can see a neuro for around £100 - less than you think maybe?

I'm just unsure at present. Last night I had sudden bad bout of Sciatica again just out of the blue and had to take a couple of ibruprofen to get comfortable in bed. Eased again today - but was it Sciatica or similar MS related symptoms? ( calf pain, hip pain and back pain.) The ON is mostly gone but blur still remains slightly and I see the orange glow on the peripheral vision when the light goes out at bed-time.

Anyway, thanks for your message - we'll keep the flag flying! I hope you're doing OK. Cheers.