Isolate 6th nerve palsy

[MargoMS]

Hello! I'm still in the diagnosis phase of this whole adventure but preliminary MRI scan suggests demyelination lesions. My GP is fairly certain it's MS. My question regards the potential resolution or otherwise of my symptoms. I'm a 34 year old Caucasian  female and I first developed double vision in March of this year. The episode lasted for 11 days, there was horizontal double vision which resolved when one eye was covered. It really only affected objects at a distance of at least 20 feet and especially evident in motion - driving was particularly troublesome until I discovered that wearing a patch over either eye got rid of the problem. The double vision then resolved as quickly as it had appeared and so I thought no more about it. I went to the GP shortly after the symptoms resolved and he performed routine bloods and had a quick look at/in my eyes and everything was declare normal. The double vision then came back a few weeks later, only a problem when driving, often worse in the morning and occasionally resolved by the evening.

Then a couple of weeks ago I noticed that my balance was off. And the double vision (which was now constant at distance) began to affect objects in much closer proximity. I also noticed that I had difficulty judging distances, opening drawers, putting glasses on the table/counter properly etc. Went to see optician, thorough eye exam revealed generally healthy eyeballs, inside and out. Went to GP who referred me to neurologist. CT scan, lumbar puncture and MRI are highly suggestive of MS. My question is, is an isolated 6th nerve cranial palsy a fairly normal presenting sign, and, has anyone had to undergo surgery to correct their vision if it doesn't resolve? And if it doesn't resolve, does this suggest it's PPMS rather than RRMS?

Many, many thanks :)

[Ricobord]

Unfortunately, a negative CSF test does not rule out Lyme, and some people with Lyme also have positive oligoclonal bands.  Your results are definitive for neither MS or Lyme. Unfortunately, most doctors have an outdated belief that negative in the CSF excludes Lyme.  Doctors who treat lots of Lyme patients say only 10-30% of their patients who have an LP test positive for Lyme.

I tested negative in my CSF for Lyme even though I had an active infection.  There is a lab in CA that is a specialty lab for tick borne diseases.  It is called IGeneX.  People send in samples for tests from all over the world when they have Lyme symptoms, but test "negative" on standard tests. A western blot at IGenex will show if you have Borrelia specific antibodies that are ignored by standard testing that still show an active infection.

I would encourage you to ask your doctors for more diagnostic testing for both MS and Lyme. (I went through the whole work up for both.) Given your symptoms so far, it could be either one.

[SarahL2491]

See if you can get a copy of the neuro's report.....at least stateside we can.
Good luck and keep us posted!

[MargoMS]

Hi Ricobord - I had considered Lyme Disease as a differential but my CSF results came back as IgG oligoclonal band positive and nothing else abnormal - I think that rules Lyme out?? Certainly it seems to rule MS in more....

Hi Sidesteps - thanks for your story! At least I've had the MRI and the CSF analysis and all that jazz, so I'm pretty sure the underlying cause of it all is MS. But the vision issues are so frustrating!! I suppose I should be grateful that as an MS symptom, isolated vision problems are a mild manifestation of the disease. I see my neurologist on Wednesday so will ask him about IVSM. I think he is reluctant to try steroids because I've had the vision issues for 3 months now, so he doesn't consider it an 'acute' episode. Although I still find my vision deteriorating and the double vision gets worse by degree - so I think it would be worth a try. Will also ask about starting disease modifying treatment such as interferons, because I'm positive for MRI lesions and IgG bands so hopefully that will make me a good candidate...

Many thanks for your inputs!

Margo

[Sidesteps]

Hi Margo!!! Welcome to the forum.

I did not present with 6th Cranial Nerve Palsy but it appears that I have lesions affecting the 5th, 6th and 7th Cranial Nerves.

One of my chief complaints (for nearly a year) was my vision was "off". I couldn't explain HOW... and the doctor's didn't think outside the box. If you were to look back at my posts my vision symptoms were extensive. The Neuro-Ophth was stumped and initially thought they were refractive since I had double vision (both with one eye and both eyes) ... I

Eventually I came down with a flare that caused Optic Neuritis and we did IVSM for 5 days. ALL the vision symptoms were gone in 36 hours!!! ALL! The doctor was shocked as my single eye double vision (which is usually refractive and not neurological) was neurolical. ALL of it.

I am going on 3 and half months after having IVSM and am slowly having regression in my vision issues. I have good days and bad days...but four months ago I didn't have good days. Everything was a strain and very blurry. My vision was really bad; to the point that I shouldn't drive at dawn, dusk and at dark.Today,  I barely notice the blur or double vision unless it's an unusually bad day.

I would see if it's possible to as for IVSM to see if it helps our vision. I hope for you, the same results as I had (even if they are temporary!)

[Ricobord]

You might want to get checked out for Lyme Disease before you try steroids.  Demyelinating lesions and 6th nerve palsy are a couple of the MS-mimicing symptoms of Lyme. Steroids will make a Lyme patient worse, whereas they will help an autoimmune disorder.  Lyme caused lesions are usually smaller than MS lesions, not in the "right place" for MS lesions, and are usually not enhanced on an MRI with contrast.

[MargoMS]

Thanks Ren :)

My double vision is all directions and at all distances, apart from about within 1 foot of my eyes. Mostly I've heard you should only wear a patch (wearing one helps me a lot) for short periods/specific tasks/driving throughout the day, and I'm hoping the optician will get back to me soon about getting some fresnel prism stickers for glasses so I can get out and about more throughout the day - I've become a virtual agoraphobic at the moment!

Fingers crossed for a definite diagnosis later this week.

All the best,

Margo

[rendean]

Dear Margo,

I have bilateral 6th cranial nerve palsies. My initial onset was  3 months of essentially non-stop vertigo unless I Iooked straight  ahead without any variance.

After the vertigo subsided the ^th nerve palsies were diagnosed. I do fine  with looking straight ahead. It's amazing how you  adapt to the curves life  throws at you. I simply turn my body in the direction I want my eyes and then I have seldom occurrences  of double vision.

I wish you luck with your hunt for a diagnosis. For what it's worth, I had 2 steroid infusion therapies with the vertigo and double vision and it did not help.

Let us know how things go.  We love to hear updates, good or bad so we can help  or celebrate with you. Even if the dx isn't MS  we can still provide  support.

Wishing the best and patience while they try to figure out  what the cause is of your palsies,

Ren

[MargoMS]

Humble apologies for having taken so long to post a response. I typed out a couple of fairly lengthy posts last week but when I went to submit them, there was a technical problem and all the content was lost. Plus my eyes continue to deteriorate to a point where I can no longer read or write without wearing a patch.

I have found it terribly heartening to find such a helpful and pro-active group on line and I apologise again for taking such a long time to reply!

Michelleric - the 6th nerve palsy was diagnosed by the neurologist. Bilateral and apparently progressive - I have it all the time, regardless of which direction I'm looking in or at what distance the subject is from me. The optician says my eyes are healthy to all intents and purposes, and he has referred to the eye clinic to get prisms fitted..

Sarah - I'm still waiting to hear back from the doc about the lumbar puncture results. Apparently the neurologist has looked at my MRI and my blood and CSF results and has written a report for the GP. I have a GP's appointment on Thursday so hopefully I'll find out more about it all then. I do know that my MRI showed quite a few lesions that were consistent with demyelination, but other than that.... SO FRUSTRATING that it's all taking so long. Have had the symptoms for 3 and 1/2 months now and I'd really like to know whether the results thus far suggest irreversible damage, or whether with time and patience, the lesions may well resolve on their own.

DiannaKw - the neurologist reckons that because my symptoms started over 3 months ago now, the steroid therapy wouldn't help. Although given that my vision continues to get worse on a weekly basis, I'd be prepared to give them a try!!

Anyway, many thanks again for taking the time to get in touch. I have fingers crossed that I'll get some helpful information from the doctor later this week, and if I could just get my double vision helped back to normal, I'd love to be able to get back to work.

Warmest best wishes to you all

[DiannaKw]

Hi Margo

I have RRMS. My initial presenting MS flare appeared to be a case of Bells Palsy, which is caused by dysfunction of the 7th cranial nerve. This also resulted in chronic double vision, along with facial paralysis. The good news is, it did eventually resolve itself completely without the need for any sort of surgery or invasive treatment - just a round of oral steroids, which didn't seem to help much, considering it still took a couple of months.

[michelleric]

Forgot to mention something else u asked about.

If a person has single vision straight ahead in the distance, you would not operate at all.  Very rarely does a person have eye muscle surgery from a 6th nerve palsy, if ever.

Also a 6th nerve palsy due to ms, would not make a difference or diagnose rrms vs. ppms.

[SarahL2491]

What did your lumbar puncture show?

Rrms symptoms from active flares can take up to a year to resolve although most do not

Welcome to our little corner of the world

[michelleric]

Hi, welcome to the forum here...

Did your ophthalmologist diagnose you with a 6th nerve palsy?

Yes, some cranial nerve problems can definitely be associated with MS, but they can also be due to a number of reasons. A 6th nerve palsy does give you double vision, primarily at distance and in side gazes.

Sometimes there isn't any reason for it either. Bizarre, I know.  However medical issues can bring on such as diabetes, ms, etc.

Sometimes, a good portion of the time, it will resolve on its own, but can take up to a year to happen.

There are prisms you can try to get a single image, or just as you found to patch an eye.

I never realized how life altering double vision was until I had it. (I have worked with patients for double vision for 23+ years!  Life sure can be ironic sometimes...

Anyway, best of luck to you, and ask to be referred to a Neuro or pediatric ophthalmologist who sees adults.  They are generally the docs that can help you with prisms.

Michelle