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12080135 tn?1453627571


Last Dec I had a lumbar discectomy S1/L5 which was healing well until early Jan I had a sudden loss of vision (inc colour) in right eye.
I have relatively low blood pressure avg 100/60 and am taking 75mg of Amitryptiline, 400mg Aciclovir (for cold sore prevention), 500mg x2/d Naproxen, 20mg Omeprazole, Paracetamol 1000mg x 4/d.
As a child I had Measles and German Measles x2 as well as Migraine usually related to menstruation cycle in my teens and twenties.
I was born Jan in Australia but moved to the UK aged two, I am now 48. My mother was diagnosed with RRMS age mid 30s

The original diagnosis of my eye was thought to be Posterior ION post-operative, despite it being 5 weeks after op. I had OCT and field vision tests which were all quite severe sight loss but no swelling of nerve or pain. Q whether medication could mask those?

I have been tested thoroughly for cardio probs with carotid artery tests, ECG, contrast echogram to check for clots that could affect Optic Nerve. My father had cardio myopathy, I am clear.

After 3 ish weeks my sight started to return to the point where 1 month on it is nearly back to normal though not quite. It changes slightly daily. This has confused the specialists so far.

I had a head and orbits MRI last week (will be having blood tests for Vit D and Lymes next week too).

So, pretty thorough so far but no real answers, I'm seeing Neurologist next week but would like some feedback on what my MRI results might be saying ahead of this meeting, so here goes:

Axial T2 and coronal flair demonstrate multiple hyperintense lesions within juxtacortical, subcortical, deep and periventricular white matter. Also a few lesions in the corpus callosum and pericallosal area (on saggital flair). One of these in the right high parietal juxtacortical region exhibits some diffusion restriction.
None in T1 sequence. No definite lesions in brain stem or cerebellum.
Morphology and distribution of these lesions is highly suggestive of plaques of demyelination.

Coronal stir seq demonstrates focal high signal within right optic nerve which could indicate optic neuritis.

All rest were normal.

What does this all mean and which bits of me could or will be affected! Very stressful few months with it seems something new to deal with coming from left field each week. Any help in explaining all these technical/medical terms would be well received.
Thanks x
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12080135 tn?1453627571
Well saw Neurologist on Wed and did lots of tests with me but wants a contrast MRI on brain, optic and also top of spine too. His reasoning was he wanted to see which lesions were active and where, to see how it ties up with symptoms and lack of symptoms to date.
He agreed MS most likely but also more bloods to eliminate the more unusual possible mimics that haven't been checked yet.

My Lymes test was negative but Vit D was borderline clinically deficient so have been referred back to GP to manage that - dosage 40,000/week over next 8 weeks to get it up to a good level then maintain. Read so many articles about Vit D as a consequence - wow, really should be more in the press for all those living without sun for half the year!!

A lot more positive about things, so back to being me again! Whatever outcomes or things get thrown my way, I know I am strong enough to handle them and have a brilliant network of husband, daughter, family, friends, work and this community amongst others to keep my fighting spirit intact.

Thanks for your initial replies, I am sure to have more questions as things move forward!
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12080135 tn?1453627571
Thank you Corriel, feeling rather pathetic just now which is not like me at all. Hearing about other peoples journey does help, it makes it more real rather than the current bizarre walking dream I seem to be experiencing. Hopefully my Neuro will have more to say re the MRI on Wed but like many recommendations I've read I'm going in with as much background detail and questions as I can think of - better prepared when I think of it than to sit there not being able to remember what I wanted to say!

Again thank you to you and supermum_ms for supporting and answering so quickly. I'm guessing all newbies are in a state of shock as well as those who've lived with the illness (how do people refer to it btw?) and are either relapsing or simply living with what they have just now.

Mini blub coming on so I'll stop now before I drown :-/

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Avatar universal
Hi there! Welcome to our awesome group. :-)

I presented with visual field loss in both eyes and it was thought to be a stroke originally. Other than visual field rest all of the eye testing, including OCT was normal.

I got an MRI which was suggestive of MS so I was referred to a neuro. He ruled out blood clotting issues, etc. and did a spinal tap which was what it took for me to get an MS diagnosis.

Like you, I have pericallosal and parietal lesiins and some around the corpus callosum with frontal lobe thrown in for fun.

My parietal lesion was big enough to cause the vision loss but my optic nerve appeared fine on MRI.

I did find my vision fluctuated a lot and it mostly cleared up after 3 months. Heat and stress made the vision worse again for me for another 6 months but usually  just the bad eye.

All cases are so variable and I am glad it seems your medical team is on top of things.

Hang in there!
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987762 tn?1671273328
:D you've actually found a great community, we collectively do our best to make sure every post has responses, either personal experiences, factual information often with research links, hugs and support and we even have a few laughs too :D

Word of advice.............you are not your mother!

No two people with MS will ever have the exact same collection of symptoms and experience, if it does turn out to be MS your life will be completely different! 30 years ago everything about MS was different, disease modifying drugs (DMD's) has changed the expected outcomes and level of disability now is chalk and cheese.

I'm an ex gymnast too, i walk like a human string puppet now but i still wakeboard lol not as i'd like and there's a lot of planning to it but my point is that you should be able to use your competitive nature and drive to keep you doing the things you love, even with MS. Keep looking forward!!

Keep your head up and please don't allow your thoughts to spin.....


btw no question is off limits and if you want to look at pasts questions and answers on any topic, type the topic in to the box at the top of your screen and will give you a list of related posts.  :o)    
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12080135 tn?1453627571
Thank you so much for replying JJ, it has felt like I've been in a pinball machine these last few weeks.
Having watched my mum for 30 years go downhill when the two non- Neuro doctors said it was what they thought it was, I was devastated just thinking of Mum at the end of her life rather than the gradual descent. Then again I thought of that too and again have just been shell shocked that this is what is in store for me, and again thinking about changes in medicine - but not so much available really.
As you can tell just ping ponging around!
I did gymnastics til I was 18 and then karate at international level til I was 32 and 6 mths pregnant! Now do road cycling and Pilates mostly. So v active, wonder if that's helped keep it away.
I still have gd balance, no muscle weakness bar my leg but that's from the back problems and losing calf muscle (working with physio to sort that out). So I was thinking what other symptoms do I have to make this diagnosis 'real' and to be honest I'd say probably two main things
1. My memory is awful, has been for as long as I can remember (no pun intended). I forget words, names (of people I know), often mid sentence and then by the end of the sentence I can forget what I'm saying. Cognitive issue perhaps?
I think part of this is just me though, I spring board about with ideas esp in my job where I am a senior manager (Master Black Belt Lean Sigma) running a business improvement team, also NLP Practitioner, Psychometric Tester etc.
2. I have been having extreme leg cramp in my right thigh and calf for yrs now, comes on unexpectedly when sitting, standing up, doing exercise etc. My GP has done blood tests and tried me on loads of different pills etc but none work, bloods were normal and no idea what causes them - had stopped for a few months but back again last two weeks. Linked to the spasms perhaps?
3. Sudden need to wee and make a dash for the loo? Perhaps just me getting older!
4. I snore - badly!
But then I am allergic to dust mites so they make me blocked up each night and can bring on Asthma attacks ...

You see, knowing some of the signs from my Mum I'm not sure helps. She had no real balance, couldn't walk much from fairly early on progressed from sticks, walking frame to wheelchair in only a few years. I haven't got any of that.
She struggled eating and would often choke and cough, don't really have that - though I do wonder if my tongue us slightly affected as I feel I slur when I'm not drunk even - no one else seems to agree with that, but my tongue feels as if it is too big for my mouth a lot.

Flipping heck, I've wittered on a bit, sorry about that but again thank you soooooo much for replying, I wasn't sure if someone would.
I am worried about next week but perhaps as much about having MS as him not being able to say I have if that makes sense?

Also 'belter' that you're an Aussie, really made me smile. I have a little Aussie pal on Facebook who also has MS which is weird and family still in the Adelaide area. Nxx
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987762 tn?1671273328
Hi and welcome to our little MS community,

I'm so sorry you've definitely been having a heck of a time (hugs) and i'm additionally sorry of what i'm about to say!!

Unfortunately your brain MRI has everything that we look for, 4 of your lesion locations are suggestive (Juxtacortical, periventricular, corpus callosum, optic) which on it's own would put MS at the top of the list of potential causes.

According to the Mcdonald diagnostic criteria to fit the clinical definition of MS, there needs to be lesions in at least 2 out of the 4 specifically identified locations and your MRI has identified 2 of the locations as well as the corpus callosum and optic which are highly suggestive of an MS causation too.

The MRI evidence is usually only one piece of the puzzle, the type of symptoms and if there is a notable pattern (Relapse Recover) that a person is experiencing is important, and from what you've mentioned with your sight, it sounds likely to be Optic Neuritis which the MRI is indicating. Optic Neuritis is one of the most commonly recognised symptom experienced prior to being diagnosed with MS, though MS is not the only condition that causes it.

The OCT is suppose to be able to find Optic Neuritis, its an alternative test to the visual evoked potential (VEP) but i expect you'll probably have additional visual tests to confirm it or not.

Other diagnostic test results are used to add to the already suggestive MS  evidence or used as evidence leading away from MS and towards any other potential causes. Visual and peripheral nerve tests, Lumbar puncture (LP), blood tests are the common additional tests but often a persons neurological assessment is showing signs of lesion damage, sometimes before the MRI shows the lesions, so the clinical signs are also very important diagnostic evidence.

As part of the MS diagnostic puzzle, one aspect is to have no other medical condition that could also account for the evidence you have, MS isn't a diagnosis of exclusion as such but there are definitely some other medical conditions that can also produce similar evidence, so it can take a bit of time before you know if it definitely is MS or one of its mimics.

Having MS thrown at you unexpectedly is very confronting I know, but if you can, try to take each step at a time, keep breathing and find ways to reduce your stress levels, because it may time some time before you know for sure what's going on......


PS Aussie Aussie Aussie oi oi oi  

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