Don't know my next step....

[mauismom]

Hi all.. I am 52...I had been having trouble with my eyes..ie glasses not working..visual disturbances while driving etc and it was enough to see my eye doc. He told me I have convergence problems with my eyes not focusing on  the same thing at the same time, I have no depth perception etc...still having problems a year later so I saw my cousins husband, last July, also an opthalmologist and he said my left optic disc was pale...but not much else....I had my regular eye appt at the first doc again this past April  and he had me see an otoneurologist....I got in right away...he thought I had MS...both of my optic nerves are pale now and just from what I was telling him about balance problems...he scheduled me for an MRI which came back unremarkable...no lesions no nothing....but he told me he still has a feeling that I DO have it and did some reflex tests and they were considered hyper active... and  he says I have mild ataxia..I don't know what my next step should be...the report I got in the mail today from the neurologist says "findings suggestive of a generalized systemic demyelinating disorder." But the MRI showed nothing....He just went on vacation so I have a million thing going through my mind!!! Thanks for listening!!! Linda

[SarahL2491]

Your eye doctor can write your neuro a letter about your ON conditions.  Mine accepted this as a CIS (I had 2 episodes 2 years apart) along with my lesions as more than enough to Dx.

Welcome to our corner of the web

[Deb61]

NMO or Devic's is another condition to be added to the demylenating list.  

Did you have an MRI of the spine?  Having problems in both eyes--especially if it looks like ON, Devic's or NMO should be ruled out.  There's now a blood test for NMO that is done through the Mayo clinic.  NMO presents often times with optic neuritis and myelitis (lesions--usually a long lesion of the spine). Usually in NMO, the brain MRI is unremarkable.  If there are brain lesions, they are often nonspecific.  

It's considered a rare neurological disorder, but it is confused with MS, so it's very possible some of us that are diagnosed with MS actually have NMO instead because ON and myelitis can occur in MS.  A co-worker of mine was going through a long period of limbo and being seen by an MS specialist.  She and I had many of the same symptoms.  She ultimately was diagnosed with NMO.  

Also, vascular problems and autoimmune disease can effect the optic nerve.  Lupus and vasculitis are among some other possibilities to be considered.  Perhaps your internist can help screen for this.  

[Guitar_grrrl]

Don't you hate it when the doc goes on vacation just when you need answers most? Hahaha!

I can't add anything to what JJ and the others have posted, here.  Do keep in touch, OK?

[mauismom]

Hi JJ yes I have COMBED the computer about this Optic neuritis..some sites say it is normal other say it is not a good thing..the one expert on here that I asked last yr said it could be a variation of normal in some people...so I am very confused.. I have no symptoms other than the weird vision with my glasses on.. and my eye nero told me to tape over my left lense when I drive which I tried but is is hard to get used to that...he also said my eyes are suggestive of bilateral internuclear opthalmoplegia...I looked that up on you tube and I don't think my eyes are to that extreme as to the man in the vidoe..that was kind of scary...anyway..the past few days have been great...I was to the point of driving that I was afraid to get into the car...as soon as I see brake lights ahead I made sure I had my brake pedal handy to stop way back..the driving is what made me think... I have always had issues with driving but this is different... I also didn't mention that I have had panic disorder since I was a young girl.. I have had a lot of full blown anxiety attacks and an just an anxious person... for the balance issue, I always take a cart in the warehouse stores like Sams or Walmart or even smaller stores...walking down aisles is weird for me and when I used to work in a building I would have to hug the wll while walking down a hall...I feel that unsteady...to me just to walk out in the open feels unbalanced and if I have my dog..it is fine..something to hold on to... we went to NYC to my sons graduation and I felt better carryine a big purse than just walking with nothing... I thought I had vestibular problems...so now I am just confused... just taking it day to day...today is gonna be a good day!!!

[mauismom]

OOPS Just found it...sorry..thanks!!!

[mauismom]

Thanks you two....I am seeing my internist on Tuesday so that is another start.... where is the Tincture of Time post??

[supermum_ms]

Hi and welcome Linda,

I bet your mind is spinning, dont panic though, it doesn't help, breath, just breath! You might like to have a look through our health pages, just to the right of your screen, many answers to your questions will be found there and a few you've probably not thought of yet.

Pale optic disc is a sign of ON (optic neuritis) which is commonly found in people with MS but it can be a stand alone dx too, do some research into ON and you'll understand it more, and treatment options eg IVSM, prism lenses etc Understanding what everything means, i think also helps slow down the spinning.

Bad timing on your neuro going on holiday but at least he dx you with what he's thinking, though not very nice news to get in the mail so he's a bit thoughtless. hmmmmm "findings suggestive of a generalized systemic demyelinating disorder." is basically an umbrella term, probably meaning he's not identified the exact one yet, not enough clinical evidence to dx.

"Demyelinating conditions (loss of normally formed myelin):

• MS (multiple sclerosis)
• ADEM (acute disseminated encephalomyelitis)
• PML (progressive multifocal leukoencephalopathy)
• HIV encephalopathy "

http://www.your-neurologist.com/neurological-disorders.html

MS is the most common especially if your female between the ages of 20-50 but there is a criteria most neuro's follow to dx, see Mcdonald Criteria and that will help you understand why your 'suggestive' and not difinitively dx. The general concensous is that its a good idea to see a neuro who specialises in MS, so if your neuro isnt a specialist, it might be a good idea to get a second opinion.

Ask any question you need an answer for and we'll do out best :o)

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

[rendean]

Linda,

I share some of the symptoms you do. My MRI  is not all that remarkable either. Initially only 2 round lesions, that I was told were too round to be MS , they have to be ovoid....wrong!

I would seek an opinion from an MS neurologist and see where to go from here. A physical exam can show signs of MS and these need to be documented for you to get a proper diagnosis of whatever neurological ailment you have.

Please read the post "Tincture of Time". It may shed some light on the subject for you.

Best,
Ren