DX from Optho Neurologist

[maybems]

So many questions.  I have had symptoms for years following an epidural for hysterectomy.  Cold sensation, numbing, sharp pains in my feet and legs, completely random leg muscle spasms, diminished eyesight and times when it was so hard to think I was sure I'd had a stroke or maybe Alzheimers.  A few what I thought were eye infections.  Balance over the years has deteriorated.  I'm only 54.  I went to a neuro probably 10 years ago, about a year after feet and leg pain began.  Many tests, no DX - opinion was that my spinal cord may have been knicked at time of epidural.

Going to the docs is not my hobby.  I figured things were the way they were going to be and continue to "just live".  During the last eye flare my primary observed abnormality in pupils and hence my latest round with docs.  Brain, spinal and chest MRI and CT - with and without contrast, the EEG thing - all good.  The OpthoNeurologist though observed nerve injury and many areas where vision is gone (like swiss cheese) - so we are back to MS.  I will have the LT on 12/1.  It would be great to have a diagnosis.  Am I wrong to think that if it is MS - since no lesions are apparent - it's not that bad?

[SarahL2491]

Don't put all your eggs in one basket for the lumbar puncture test; mine showed nothing and I have lesions on brain and spine.  Although on 2 MRI's, both 3 idiot doctors and the radiologist said I had none……….fast forward 6 yrs or so and I found a fantastic neuro, from someone on this forum, and he showed me the lesions on the 2 MRI's that were supposedly clean……………it takes time and is so frustrating, many of us have been down that road………my neuro feels I've had it since 1981, it just wasn't found.

Have your neuro actually look at the MRI WITH you…………and yes, spinal lesions are very difficult to see.  JJ has given you some good advice as have the others!

[supermum_ms]

Hi and welcome,

If you are saying because you now have evidence of optic nerve damage (Optic Neuritis), MS which was previously not on your list has now gone to the top of your list BUT....... through out a 10 yr time frame, 'as far as you know' your neurological tests hadn't found any clinical signs (eg pos Romberg, clonus, hyper-reflex etc) and you've also had absolutely 'zero' lesion development (eg unspecified, demaylinating, ishemic etc) on your MRI's, in any location of your brain and or spinal cord, is that right?

I'm thinking a very possible explanation of why your neuro and neuro-ophthalmologist could now be thinking MS, is that as well as the evidence of optic nerve damage (ON), you do actually have some non-specific lesions on your brain MRI but they were previously discounted/dismissed as significant or suggestive diagnostic evidence of MS.

My reasoning is that ON, whilst also being a stand alone diagnosis (dx),  usually isn't enough on it's own but if there are 'any' brain lesions picked up on a persons MRI + ON, they have much higher odds of being dx with MS within a 5 year time frame. see http://www.ccjm.org/content/76/3/181.full

If you haven't looked at your MRI reports and are going by what you've been told, it might be an idea to have a look and read if anything has ever shown up and if so, the actual locations specified in the report, because it wouldn't be the first time a neuro has told someone their MRI is normal-fine-looks good etc when it really wasn't......

Cheers..........JJ

ps No lesions usually means it's less likely to be MS and more likely to be something else, but although its not very common, a person can have MS without lesions showing up on their MRI, they often do have clinical signs of lesions though. ummmm i don't think there is such a thing as a little bit of MS :D    

[maybems]

Thanks Kyle.

I was hoping the answer would be more along the lines of no lesions = just a little bit of MS - you know?  It's the not knowing that concerns me.

I am very happy with my Neuro - she is an MS specialist.  She has impressed me with listening and hearing me, and being very systematic in her approach to rule MS out.  That's the thing, she was pretty much there - ruling it out because of no lesions on any of the MRI or CT things she did.  Then, I went to the OpthoNeuro (she sent me) and then wham!  Now both she (my Neuro) and the OpthoNeuro are convinced it is MS.  Not really sure what the LP will do except hurt - but.....

I just want to know.  I don't want to wallow or dwell.  In such a huge way - it is such an incredible relief to have the potential of a diagnosis.  If nothing else, it lends "credibility" that there is something causing these issues other than me being a hypocondriac or otherwise seeking attention. I'm not, and while I would love some attention - this is nothing I would ever imagine.  

At the end of the day - it is what it is.  I'm hopeful to prevent as much as possible - any further worsening of balance and vision.  I'm grateful to have found this sight and appreciate all feedback

[kwarendorf]

Hi M.MS - Welcome to the group.

Being in Limboland is no fun.  Trying to get out of it isn't much fun either.

It's possible that there is more than one cause of your symptoms. An injury to the spinal cord from your epidural could be the cause of symptoms from the point of the epidural down through your toes. It will not cause balance, cognitive or visual problems.

It is possible to have MS without lesions appearing in MRI. Spinal lesions are pretty good at hiding out of MRI reach. Your LP may provide some information, but LP results are being relied on less frequently than in the past.

All of the available testing is done to support a clinical diagnosis, which is what MS requires. There is no smoking gun tyest for MS. A clinical exam is the most important piece of the puzzle. Is the neuro your seeing an MS specialist?

About lesion count and "degree" of MS, there really is no relationship. If you were to see me on the street you would never guess I have MS. If you were to see my MRI you would no idea how I could still walk :-) When I was dx'd 3 years ago I had old and new lesions in my brain, c-spine and t-spine. I'm lousy with lesions.

Kyle