spinal lesion AND optic neuritis

[anon07072023]

Help me please. I'm getting the usual run around from a neurologist. A problem that I see quite a few comments on.

Dec 2008 I presented with lower left side weakness, paresthesia, severe spasms/tightness in left hamstring, and incontinence. A subsequent MRI showed a spinal lesion - a partial spinal lesion.

Feb 2009 I had bilateral optic neuritis. I went to an optometrist at the time and that's what he thought it was. 3 months later went to neuro and had a brain MRI that was inconclusive. Then I read in my neuro's notes that he doubts seriously that I actually had optic neuritis (like he didn't believe me or something)

Today, I went to see an opthamologist and he did a Goldmann Visual Fields Test on me and said I DEFINITELY had/have optic neuritis because even today I still have 3 central blind spots in each eye - he said the reminants of optic neuritis that's still showing evidence.  He said that these show a demyelinating process taking place.

So...even though my neuro didn't believe me about the optic neuritis I do/did have it.

Would that mean that I would have definite MS? Does anybody know? I thought an answer that Quix had given to me on another post - said something like this.

My neuro seems like he may have too many patients to actually listen to his patients or something.
It's driving me crazy. And now here it is, 17 months since my first onset of symptoms and I haven't started any DMDs or anything. I don't want to have to wait, if it is MS......

Thanks everyone,
Kelly

[anon07072023]

I really do appreciate all of these comments. Thank you.
Now I am beginning to wonder about Devic's Disease. I did have the test almost a year ago. And I was led to believe by my neurologist that the test doesn't have false negatives.

He sent it to Mayo and they say that it gives a false negative in about 1 out of 3 cases.

And since I do have simultaneous bileral optic neuritis and a spinal lesion, plus my lumbar puncture was negative (I know that 15% show a false negative, though) - I think I may have all the hallmark signs of Devic's Disease. If that's the case - that would be pretty scary.

I'll talk to my neuro's PA about this in 2 wks when I go in to see her.

Thanks again - you are all a wealth of information.

[doublevision1]

My understanding is that bilateral ON is less common in MS than some other conditions.  Typically in MS, at least initially, ON presents in one eye only.  

Given that, and the spinal lesion and clinical symptoms you describe, I'd encourage you to be tested for Devic's disease.  Thisi s a simple blood test referred to as NMO-IgG.  A positive result is virtually 100% conclusive.  A neg result is inconclusive as this test is known to produce false negs.  After a neg result, if symptoms persist and no underlying cause has yet been found, the test ought to be repeated later on, as in some cases it is a matter of time before the antibodies are detectable by this test.

Also, have you had a LP?  In MS, there are typically but not always O-bands, whereas in Devic's, O-band are rare.

[sllowe]

I bumped up the follow-up study thread, and pulled this out of it:
-----
      Twenty-five percent of patients with no lesions on baseline brain MRI developed MS during follow-up compared with 72% of patients with 1 or more lesions. After 10 years, the risk of developing MS was very low for patients without baseline lesions but remained substantial for those with lesions.
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Please note, the percentage sure does jump w/presence of lesions...Hope this helps.

-Shell

[sllowe]

Hi there,

Having lesions at the time of ON does increase your risk. I'll look for the article and give it a bump for you!

I 2nd the 2nd opinion neuro suggestions.

-Shell

[anon07072023]

Thanks everyone for all of your replies.  I'm going to see my neuro's PA in 2 wks to discuss this with her.

And since there was a 6-7 months waiting time to see my neuro again, I'm seeing a neuro at the Rocky Mtn MS Ctr in late July (previously late June, but they called to move it out a month).  

I was just thinking that the spinal lesion with those symptoms, then the optic neuritis, with the symptoms from that would be definite MS or at least probable MS. I guess I may be kind of confused. However, it kind of sounds like it is a separate of space / time to me, though, but I'm not sure.

Nickie - I hope you can find a good neurologist, too!  Best of luck.

[HVAC]

You also need to see a Neuro Opthamologist not just an Opthamologist. I had seen an opthamologist and had extensive tests, but I had to go to a Neuro Opthalologist. They did a bunch of tests I had not heard of. She said I had MS when the Neurologist at the time told me did not. She told me I had to get a diagnosis.

Often ON develops into MS down the road.

It took me four Neurologists to be diagnosed with MS.

Alex

[Nickie72]

Hey, Lulu! It's good to see you and I hope you are doing well!?

I really don't know how many more symptoms these guys want. I mean, I couldn't walk for 3 weeks back in 1998, have severe memory problems, chronic pain and fatigue, and just recently got over muscle atrophy in both legs, which left me home-bound for quite some time with the help *cough* from visiting nurses...

And now I suffer from a lot of sensory problems, one being that I feel my legs are ice cold to touch, but when someone else touches them, it's completely the opposite. Hot spots, numb patches, falling, speech problems....blah, blah.

Every test has been done. I'm sure it's only gonna take the right Neuro, but with past experiences, I just need a break for while.

Again, good luck, kelly! (((hugs to all)))

[Lulu54]

Nickie, You need a new neuro- it sometimes takes several neuros to find a doctor with the cahones to dx this is you don't have all the classic symptoms and test results.

Kelly, Kendra has given you a good reference.  Having ON doesn't guarantee that you will eventually have MS.  Also, not everyone who has MS has had ON (I'm an example of that!). as for your neuro, read what I wrote to Nickie.  That applies to you too - find a new one who has time to listen.

be well,
Lulu

[Nickie72]

Hi Kelly, and welcome to my world, although it's been years for me. I hope to God it won't be the same for you! Believe it or not, my MRI showed ON, and I also have numerous lesions, and fit the Mcdonald criteria to a T.

Why am I not being treated? Because the Neuro's that I've seen say that my lesions are all migraine related, even though I said I don't suffer from migraines. Do I get them? Yes, but not on a regular basis. Maybe every 2-3 months or so.

My last MRI report showed an active lesion in the parietal lobe with active demyelination, and apparently that means nothing to the docs I've seen. While 4 out of 5 radiologists have said I have MS in the MRI reports, I have yet to see a Neuro or MS Specialist who believes them.

All of my lesions are 5mm or less in size, and that's the common size of the MS lesion, according to what I've read. Since 2008, I went from having lesions on both frontal lobes to now (as of Nov 2009) subcortical, juxtacortical, periventricular, parietal, the ON, and as of 5 days ago, I started experiencing double vision with pain.

I can't call anyone. I'm too angry and afraid of being mistreated once again, and I've had symptoms for over 20 years. I hope you are stronger than I am, and I wish you the best of luck.

[kendra0504]

From:

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/visualSymptoms/optic-neuritis/index.aspx

Not Everyone Who Experiences Optic Neuritis Develops MS

Not everyone who has an episode of optic neuritis goes on to develop MS. Long-term follow-up from the Optic Neuritis Treatment Trial, which involved 388 people with a single episode of optic neuritis, yielded the following:

The ten-year risk of developing clinically definite MS following a single episode of optic neuritis was 38% for the entire study group; the twelve-year risk was 40%. Most of those who developed MS did so within the first five years after the initial episode of optic neuritis.

The strongest predictor of MS in the study group was the presence of brain lesions on MRI at the time of the episode of optic neuritis. Within the study group, patients with at least one brain lesion on MRI at the time of the optic neuritis episode had a 56% risk of developing MS within 10 years, while those with no brain lesions had only a 22% risk of developing MS within 10 years.

[jensequitur]

I would look for a different neurologist.  I know it's difficult - but if he has too many patients, you won't get quality time from him.

If you can't get a different one just yet, see if you can get the results of your test sent to the neuro.  Make sure they receive it, and that the doctor has seen it before you talk to him again.

I think that optic neuritis is a definite sign of MS, but I'm not sure.