634733 tn?1316625992

Scintillating Scotomas and MS

Hi to old friends and hello to new members who have never even heard of me :-)

I'm afraid I'm being really cheeky here again after disappearing from your lives for a while,  I come back and ask questions of the 'real' experts when my neuro is being a twit as he so often is. By the way, twit is an English expression that replaces the expletives that should be applied to him!

So my question is: has anyone around here suffered from Scintillating Scotomas SS (Visual aura with no migraine)? The reason I ask is I started getting these about a year ago. When they happen I get a clutch of them altogether in a few days, sometimes several a day, and then they stop again for a month or so. They are often accompanied by other MSy type symptoms, but I can't establish which is instigating which.

As SS is a concern when it's starts at 60+ I was whisked off to the TIA clinic initially:
Consultant there said it's not vascular it's neurological go see your MS neuro.
My neuro says it's not neurological it's vascular and it's migraine. Don't worry have a look at the Migraine Trust website.  
The website says if this occurs for the first time in over 60s the diagnosis should be guarded and looked at carefully as it's associated with stroke.
I ask again of MS team and they order Carotid Doppler, EEG, blood tests, etc. nothing shows up all fine!

So here's my conundrum:
I was diagnosed with tendency to epilepsy before I was diagnosed with MS. We know MS can cause epilepsy, my neuro says there is no relationship between epilepsy and MS! But SS is also associated with epilepsy.
Then I was diagnosed with MS.
Now I've been diagnosed with Migraine too, Migraine is associated with epilepsy and with MS but my neuro says no!

Can one person really have 3 neurological problems and none of them be connected? Particularly as I know I have lesions in the visual cortex and my vision has always been an issue, hence my user name.

Thanks guys, hope you don't mind me dropping by.

Pat x
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Avatar universal
Has anyone experienced the sensation in  a way that you can feel your arms like vibrate/tremble? I swear it seems to move up and down my body and sometimes I can feel it in my head when I lay down at night. I have this feeling almost like my heart is beating in my stomach it'll just move like a rapid twitch but feels like my heartbeat.  I also get a prickly/tingling feeling in my hands and legs and I almost feel like my hand is weak or something. These syprs have happening  for a week followed by 2 weeks of waking up lightheaded, having eye problem, sleeping for long periods and still feeling tired and having that last all day. Lightheadedness has gone but now this is scaring me. I'm really terrified could anyone say if they experienced the same thing??? I've been tested for a thyroid problem, anemia, viruses, and a couple of other things everything came back normal. I'm just wondering if anyone thinks it may be a sign of MS my mom and her aunt both have it. Please someone help! I'm terrified I may have something terminable or even ALS
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634733 tn?1316625992
Sorry that should say I hope you get some answers too x
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634733 tn?1316625992
Hi AmyBaby 123,
Thanks so much for sharing that it is interesting, I hope you get done answers too.

I had 2 SS the day before the seizure, 1 on the morning itself and 4 the day after but none since.

I am VERY pleased to say my doc is sending me to the UKs leading neurological centre for a second opinion! At last after all these years I am thrilled and hopeful :-)


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Avatar universal
Hi Pat,
I was very interested to read your post as I had SS 5 years ago which led me to a neurologist... MRI showed one lesion.at that time. Fast forward  to this past year when I finally followed up... Repeat mRI showed another lesion, combined with o-bands in my LP result. So I got diagnosed with MS.

I'm  38 yrs old. I had the SS one more time (in the last 6 months) which was milder than the first time. Otherwise, I have no other "clinical events" to link with my diagnosis. My neurologist cannot attribute my symptoms of fatigue and sensitivity to sounds, irritability to MS.

Just thought I'd share.
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Avatar universal
Would u be able to help post it on new ones this is one of the only ones where I found people are still on here and I'm desperate for help
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634733 tn?1316625992
Thanks so much for the sympathy, it was scary for everyone there including my OH.  I was totally unaware until I was in the ambulance and even then I was drifting in and out. So yes the search begins, either MS, Migraine and Epilepsy are related or I have all 3!

MandieA, you need to post your message on a new post or it will be missed by most of the community. Good luck x
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Avatar universal
I am 17 have been seeing flashes of lights in corner of my eyes cause it seems like the light is almost dragging my phone,tv, lamp etc.  I see floaters when I'm driving and just recently had a problem with my eyes seeing a consistent flash that didn't go away for 30 minutes. I also have trouble looking at my TV it's almost like I can't see the white letters on the guid straight when I sit on the couch but up closer I'm fine. I'm very terrified, I also have low blood pressure Could that be a sign?? MS runs in my family could that be it??? Someone please help I can't afford to make a million dr visits. I just had my checked 20/20 vision and this just started happening like 4 days ago it's really scaring me
Helpful - 0
987762 tn?1331027953
Ohhhhh babe that must of been scary for you and your daughter! How you doing?


ps good to hear your searching, cause it's definitely time to replace your neuro!
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634733 tn?1316625992
Hi old friends again,

Just thought you might all be interested to know that since I posted this I had a full blown tonic-clonic seizure a week ago at my daughters and ended up in ED!

I will definitely be searching for a new neuro now!!
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634733 tn?1316625992
Hi old friend, how are you doing?

Yes he is absolute rubbish and the only one we have around here and the reason I waited 18 years for a definite diagnosis. It's now exacerbated by his invalidation every time I have any symptoms!

I had figured they could all be related as MS and epilepsy and migraine are all instigated by the CNS. However, he's now claiming that they don't experience a raised number of people with headaches in the MS clinic!  My GP has already written to him once about the iritis/uveitis I had which the neuro also claimed was not Ms related! You know what the neuro said "yes well now you've been diagnosed every medic you see will blame your MS for everything".

And I thought getting dx was my biggest obstacle lol xx
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987762 tn?1331027953
Hey pat great to see you!!

Hmmm your neuro is a bit of a twit or as we like say over here in Oz 'a tool'......Migraine is definitely associated with MS, seizure are fairly uncommon (2-5%) but still have been researched and recognised in MS.

This msfocus article is all about MS and migraine, very interesting reading


This National Multiple Sclerosis society article is only briefly discussing MS and seizures.


This US national library of medicine is much better, more detailed, research based and again interesting to read


MSfocus also has an article on seizures not as detailed as the ncbi but still interesting  


Hmmmm i really think your neuro might be missing the common denominator of MS here!


PS Hope that helps :D
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634733 tn?1316625992
Hi Kyle, thanks for the reply, good luck with your appointment.

yes I know we can have other things to the older I get the longer my list gets! Lol..

Just wanted to know if I should keep pursuing since it's implicated in stroke when your 60+ and wondered if anyone here had any experience.

Pat x
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1831849 tn?1383228392
Hi Pat - Welcome back.

I'm not familiar with the visual issue you mentioned. But one thing I have learned is that having MS does not prevent us from having othe maladies.

My non-MS realted eye thing is being "glaucoma suspect", aka occular hypertension. Coincidentally I have to take 1/2 day off today to to seem my opthamologist fro my quarterly pressure check :-)

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