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Help please

Hi folks

Just had an unwelcome letter from the hospital.

O bands have been detected in CSF but not in plasma. This is in addition to an isolated T12 abnormality identified in a lumbar MRI but no other lesions elsewhere after full brain and spine mri.

I’m totally confused as to what his actually means.

Is this basically the recipe for ms ?

 

Topics What is MS Diagnosis Symptoms
I have MS

Hello

I’m not sure. But I didn’t want to leave your post just hanging there. I think that ‘O’ bands in CSF but not plasma was typical of MS, but to have MS you need to have lesions separated by time and space. So generally more than one relapse and a brain lesion, or more than one brain lesion and just one relapse. O bands add to the picture, but are not sufficient alone to diagnose MS. And just one lumbar lesion isn’t normally enough either.

I think you need to hear directly from the neurologist as to what is to be determined from your results. Do you have an appointment arranged?

Someone else might have a better idea.

Sue

Hi sue

ive an appointment to discuss the results at the end of January !!! I’ve tried calling but the neuro is proving difficult to speak with. 

 

I realise the mri is the better analysis and no brain lesions would ordinarily put me in the low risk cis category but not sure how this oligoclonal bands change things. Do I increase in risk a little or a lot ? 

Im trying to focus on the mri but these bands are intriguing, I realise they’re present in CSF of over 95% of people with ms but I wonder how many people with the bands have something other than ms. I believe they’re permanently present in ms but may disappear if cause by other illness so think there may be a case for another LP test in a few months time. 

My current position is 1 inflammation event on which is no longer visible on subsequent mri, clear brain and no new spine lesions but those horrible little bands in csf.

If if only I had a neuro to ask lol 

I have nothing useful to say, but, hugs, hope you get an explanation soon.

I’ll take a free hug thanks 

Hi all,

I am new and have not been diagnosed yet.  I have read loads of the posts here and have found it informative and I also think that the sense of support is phenomenal.

I have had a MRI in September and this had shown up inflammation on both my brain and spinal cord.  I had a lumber puncture a week ago Friday and an Evoke visual test.   I requested a copy of a letter from a neurologist that I saw in 1997 and he mentioned recurrent Neuritis (which I was advised I had) but also demyelination which I was unaware of until seeing this letter.  I am cutting a very long story short as I don't want to bore anyone.  I was diagnosed with the Neuritis at the same time as ITP (a blood condition) and ME.  I was told that the episodes of numbness and tingling and partial blindness were down to the ME.  Nine years ago I was diagnosed with Optical Neuritis but have probably only had around 5 bouts of this over the 20 year period, fortunately!  I had noticed that if I pushed myself, walking fast or for about 3 miles or so that my foot started slapping and I constantly tripped but this has gotten worse and I now find that I can lose the control of my right leg.....infuriating, upsetting, frightening an embarrassing! I sit for 10 mins or so this goes and I can walk properly however if I am very tired I have to take regular breaks. My skin on my right leg from my knee down to my foot is numb and has been for about a year and it use to be that if I experienced this flare up I would get the feeling back within around 6 weeks.  It seems that things have progressed hence the reason my doctor referred me to the neurologist.

I just wondered if anyone else has experienced similar or has any opinions?  I think its highly likely that it has been MS all along as does  three of the doctors at my practice.  Does anyone know if inflammation on the brain and spine mean lesions?

Wishing all the very best.

Teenbo x

Hi Teenbo

 

im a newbie in here and am definitely in the category of receiving advice and not in a position to give any. Sorry to hear of your difficulties. It might be better if you post you question on one of the forums rather than as a comment on this thread, it would mean more people would see it and maybe someone with much more knowledge than me could help you.

ive found this website to be really helpful so I hope you do too 

Thanks Steely28, I hope you get on ok.

Crumbs, you have been in the wars for a while.  I hope that the position becomes a bit clearer for you soon - it will be about time!

Alison

Teenbo .

I was in Hospital for a while back in June , and on my discharge paperwork ,,,,,, and i quote " clinically Isolated Syndrome Inflamation on the brain and spinal cord .

I have read that word for word of my discharge paperwork , now it goes on ,,,,,,, and i quote this has been brought on by Transverse Myelitis .

Now while i was in Hospital i had all the tests 3 mri scans , lumbar puncture , blood tests , and was put on a drip and fed steroids for three days . I had one doctor say it was ms and one say it was all the above .

Now fast forward to 05 Oct just gone i was called in to see my neuro doc who is the ms specialist , we spoke then he flicked on the screen showed me all the damage to both brain and spine and diagnosed me with ms on the spot , due to the past history as well .

So if that makes sence to you and sounds familiar then it may put your mind at rest or not . Another thing not all neuros are specialists in ms , the one who wrote out my discharge paperwork was an expert in epelepsy not ms , the guy i saw in Oct was an ms specialist hence the very quick dx .

Im only going on what happened to me what was said and what my outcome was . I hope and pray yours is different , but it does sound like a mirror image .

Best Wishes Iain .

Hi Iain,

Thank you so much for taking the time to respond with your experience.  Sounds very similar indeed.  My consultant has told me that the chances are that it is very likely to be MS.  The only saving grace is that if I have had this since around 1997 it has been pretty mild but there are definitely changes now.  The MRI shows  that there is inflammation but that it has been there for a considerable time but there are now changes that can be seen!?!?!.  I will just have to be patient and wait for an appointment.  I get the impression that my Consultant does specialise in MS and it was a MS clinic that I had my appointment with him.  

Again thanks for taking the time and I hope you keep as well as you possibly can.

Best wishes

Tracy