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14998285 tn?1437801447

Well It's been 9 1/2 Years since I was here and since my first and only attack.

I used to be a member here when I had my first demyelinating event back in April 2006. I had an acute event that left multiple white matter lesions on my brain and a visual field defect. Been in Limbo ever since stuck between MS and ADEM was what the neuros said for the first 5 or 6 years.. I have only had the one event back in 2006. My neuro is now the main MS specialist and head of the MS clinic in my area of Knoxville Tn. He says he doesn't think I have MS but he doesn't know what it was either. Since then I was Dx with vitiman D3 deficiency with a very low level of 4, B12 deficiency level 200 and an Iodine deficiency which caused the multi nodual Goiter which lead me to the Endo who found these deficiencies. I have researched over these 9 1/2 years and I think that B12, Sjogren's Syndrome (since Severe Dry eye has been one of my main symptoms) Or ADEM are the only ones that seem to fit my case.. I don't know if I will ever get an answer but after a long break from doctors I think I am now ready to get yet another opinion. I don't know if anyone on here remembers me cause it's been a long time but I remember you Quix and a lot of the people on this forum who helped me. Really prevented me from being misdiagnosed with MS by the first neuro by giving me advise about what test to ask for. Just wanted you all to know that I am almost at the 10 year mark and so far no new attacks or lesions. I hope I can help someone else the way I was helped all those years ago. And maybe I can get some advise for myself on where to go from here.
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14998285 tn?1437801447
Thank you it's good to hear from you. I don't know what happend to me but I'm just glad that so far it hasn't came back. Of course I am left with a pretty debilitatiing visual field loss and some other deficits but it could have been worse.

I am wondering what link if any the B12 deficiency and D3 deficiency could have to all this. I am also seriously thinking of finding another opinion because I feel that the MS specialist I am currently seeing is only worried about finding out if it is MS which he says he doesn't think it is. He is not going to look for what it was because he told me that we wouldn't know unless it came back and that we don't want that. No I don't want it to come back but I do think I need to find out why it happend to begin with. Maybe a new fresh look at this is what my next move is.  April, 2 2016 it will have been 10 years since the acute onset.. nothing since then that I am aware of.
Helpful - 0
572651 tn?1530999357
I get so excited when i see familiar faces pop up here after looooooong absence.  But i've also been gone for a few months! LoL

Yes, I remember you well.  Stinks that you don't have any more answers than before but it is so nice to see you come back and share your update.  

best, Laura
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Avatar universal
I have always had on and off issues with photophobia because I have a pale eye color but I don't remember being light sensitive at that time (end of Sept 2012).

It seemed like I just woke up with it one morning and things seemed blurry. I also thought it was only my left eye.

It continued so a couple of days later I went to my GP. They checked my BP and sent me for blood work. Since I had a previous cornea surgery on that eye I went to my optometrist and they couldn't find anything except possibly a detached retina.

The opthalmologist on call that evening said the retina wasok. I persisted and saw another opthalmologist who did a lot of testing. The last results he checked showed the quadrantanopia so he said I had a stroke and told me I coulnd't drive for 3 months.

I went to my GP the next day and told him. No family history of stroke, no high cholesterol, BP normal. They did a CT scan that was normal too. They started me on aspirin and Cholestor to reduce future risk but it didn't feel right so I bugged them and they ordered an MRI which showed demyelinatiin and nothing ischemic.

That got me to the neurologist who said it was not a stroke unless it had been a very deep vessel. He tested my coagulation with several tests and they were all normal along with Lyme being normal.

The radiology report said MS, Lyme or Vasculitis but I honestly don't know that the neuro needed to test for vasculitis from the look/location of the lesions or if the testing was done with the huge amount of blood work that I had done.

I did not have any floaters or flashes that I remember either. I do have floaters now but likely not related.
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14998285 tn?1437801447
Was the onset of your vision disturbance acute meaning sudden?  Did you see flashing and flickering lights when  it first happend? And did you have photophobia(sensitivity to light}  Could you tell me a little about the onset of the vision loss? Also how did they rule out stroke?

Mine improved slowly over the years but I haven't had a reccurance.
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Avatar universal
No steroids because at the time they diagnosed me with a stroke. I had regular visual field testing and my right eye was not as bad as my left so the vision came back in that one after 2 months.

The left eye started to get better in that time frame but at around the 4 month mark it started to worsen again. It bounced back more quickly that time though. About 3 weeks.

That got me in to see the neuro much faster and he said it might still be a deep vessel stroke but needed to do more tests.

I did more blood tests then I had an LP which showed high inflammation and multiple o-bands in CSF that weren't in my blood.

I had my final visual field test at around 7 months and haven't had once now for over 2 years. It showed that my right eye was almost 100% and the left was close to 90%.

I had brief recurreneces whenever I was hot or tired but only in the bad eye. Knock wood it hasn't recurred for a year.

If it hadn't gotten better there was discussion about a prism.

I am sorry to hear that your vision loss didn't heal, it was a special kind of torture for me so I cannot fathom coping with it longterm.

I still check every now and then when things seem blurry. I cover my right eye and look at a digital clock to see if I can see all of the numbers or just pieces of them. :-)

I had seen one of your posts about the quadrantanopia but didn't realize that you were undiagnosed still. It is a rare vision loss and stroke was pretty much it for causes but we are both proof that there are other causes.

I really hope they figure yours out soon and please keep me posted.

Corrie
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14998285 tn?1437801447
You had a Harmonymous Quadrantanopia? It sound like our lesions were in the same areas. I seen that you said your vision loss came back and I guess they treated you with steriods right?  I didn't get steriod or any treatment because by the time they figured out what had happend eight months had gone by from the onset and my neuro said the steriods wouldn't do me any good at this point. My vision loss has not reoccured. I had one acute event that was pretty severe and no new events so far at nine and a half years. I am left with the visual field loss and some other residual damage.

After seeing a lot of vision specialist I finally found out that a neuro optomitrist is the one I needed. They test people who have brain damage related vision loss. They perscribed a pair of glasses that have a yoked prism in them and it does help with clarifying things and also balance. How is your vision now?
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Avatar universal
Yep, that was the exact same vision loss that I had. At the time I didn't notice it but I was having some cognitive issues as well.

Seems like we have a lot of real estate in common. In addition to my parietal "condo" I have frontal, bilateral around the corpus callosum and a bunch of periventricular lesions too.

I honestly can't think of anything more that you haven't been tested for.

I hope that they can figure this out for you!

Corrie
Helpful - 0
14998285 tn?1437801447
Thank you it's good to be back. Yes I have had a difficult time and I have done nothing but study MS and all the possibe mimics for nine and a half years. I know too much about this stuff  lol   My uncle had a neurological event and I told my mom what I thought it was Gullain Barre Syndrome before the doctors got done with the test.. he did have it.. all this knowledge but I can't figure out what happend to me for sure.. My PCP suspects B12 but my neuro isn't paying much attention to it because I am not an alcoholic and have never drank. My PCP said there are cased in the litature of non alcoholics having demyelination in the CNS and I had read about them myself as well. Sjogren's I think may be possibe and may even be secondary to another auto immune disorder as severe dry eye has been one of my main symptoms and has not gone away; And of course ADEM is still a possibility but I don't know what it was for sure yet. I am considering getting yet another fresh opinion and I have even considered going to the Mayo Clinic.  My neuro's answer of we wont know unless it comes back does not sit well with me because I want and need to know. I have not been on any treatment of any kind in all these years.
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14998285 tn?1437801447
I have had follow up MRI's over the last nine and a half years.. at first every sex months and then after the second year it went to once a year.. I had about 8-10 at onset. They were in the Corpus Callosum, Parietal, Occitipital, and frontal lobes. The were scattered on both hemisphere's and I also had a large one that I believe caused the visual field defect which is called a Harmonymous Quadrantanopia meaning loss of one quarter of the field of vision on both sides of the brain. It did not go away and my neuro said the improvement that I have is likely adaption.

I have more damage other than the field loss as the event was very severe. I have improved over the years but still have difficulty at times with certain things.

I did have a spinal tap eight months after onset.. It was negative with no O banding. All blood work was normal. My Polyomerce Chain Reaction test on CSF was also negative. And I have had No new lesions, and have not had a second attack. The MS specialist I see said that he would have expexted to see something, a flair, new or recuring symptom or something in this leghth of time. This is why he thinks I don't have MS because it has been a Monophasic course.

And yes they did suspect stroke at first but that is prob because that stroke is the most common cause of a visual field defect. They are confident that I did not have a stroke because the damage was too severe and they are sure it is demyelination of the white matter and not ischemic in nature. I only had one scan that included the cervical spine at the beginning and it showed no lesions there. Also about the same time my ANA test was negative. Neither have been retested since then.
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667078 tn?1316000935
Santana
Welcome back sounds like you have had a tough time of it as far as diagnosis.

Alex

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Avatar universal
Hi Santana, I had a visual field loss as my presenting symptom. I wound up having a return of that same loss a few months after it cleared up so between that, multiple o-bands and Dawson's finger lesions among others I got an MS dx.

Originally they thought I had a stroke but I am guessing all of that has been looked into for you. Have they done a spinal MRI?

I honestly don't know what else could be checked except maybe ANA count.

The visual field loss was pretty scary for me and it seems fairly uncommon unless it is stroke related. The bulk of my lesions and the biggest one are on my parietal lobe near the occipital lobe and my neuro says that the big one is my vision culprit. 3 years later and it is not smaller but I have not had vision issues for a year and a half.

I hope you find some answers soon,

Corrie
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