If your double vision resolves - in fact if it changes even just a smidge for better or for worse - the prisms will be ineffective and would likely result in blurred vision while wearing them. I was advised to wait until at least a year of completely stable double vision before making the investment. After just about a year of gradual and continuous improvement, it resolved to about 95% and prisms weren't needed for such a minimal amount of damage.
My advice would be to closely monitor your eye alignment eg: get them measured every couple of weeks or so. Until your double vision has ceased fluctuating for about year or so, I wouldn't make the investment in permanent lenses. In the meantime you can use the temp patches which you can change out with any improvement or worsening.
Do you have a diagnosis as to the cause of your double vision? "Diplopia" or "nystagmus" just describes how your vision/eye movement is manifesting, it's not a diagnosis of the cause itself. Has anyone mentioned anything like internuclear opthalmoplegia? It's reasonably common (or at least 'in line with') with MS.
I ask, because I had about one week of double vision with MS caused by internuclear opthalmoplegia, and I was immediately given a three day course of methylprednisolone with full improvement by the end of another week.
This isn't to say I know what's causing your diplopia, but when someone has MS or even suspected MS, it's something you've likely been tested for (not a complicated test, more the "follow my pen with your eyes" thing). It's the result of brain stem lesion(s), and that inflammation can be treated to a lesser or greater extent.
If it's not related to that, I'll defer to DV's knowledge! It's in her name, so she knows what she's talking about. Definitely stick around the forum for information and support. Good gravy, I remember how distressing it was for one week, so I can't imagine dealing with it day in and day out.
Good point, immi, I did jump ahead of things a bit. My double vision/ nystagmus was symptomatic of my INO caused by a brain stem lesion. Although I had 5 days of IVSM it did nothing to improve this symptom. Knocked out a few others - it was a major, multi focal attack - but as I said, took a year to lose the worst of the double vision. I envy your experience with it. This is why I learned so much about potentially living my life with prisms, whereas I doubt that this would have been on your radar during such a brief bout. This is a good example of how vastly different one person's experience with RRMS can be from the next guy's, just based on one very common symptom.
Very true re: different experiences. Sorry your experience was a lot more gradual, but I'm delighted it did - for the most part - resolve!
I guess I just went into detail with my treatment as Milliepede didn't mention IVSM being discussed with her. Due to my positive experience, I'm always inclined to pipe up with 'have you thought about this?!'
But yes, RRMS is truly a 'custom fit' as far as unique presentations and disease course goes! Keeps us on our toes... when we can feel them.
Had prism in one lens since '09 (or so); it seemed like a miracle at the time. I can tell you that I became dependent on them very quickly. Soon afterward, I lost them while canoeing.
Replacement pair did me lots of good, but the prism factor was increased in my most recent set. Not blind without 'em, now; it just feels that way!
I was having double vision whether I had one or both eyes open. I still don't understand why the two I see with either eye aren't four when I use both. Doc said it's complicated!
I will pray yours resolves itself quickly, fully, and permanently.
If, god forbid I ever get serious double vision again, I would absolutely try steroids again on the chance that i could have a better eperience next time around. It was so disabling at some points that's would try anything available to me. And I have had luck with them when I had my other vision attack whch was ON. I started treatment less than 24 hours after onset due to excruciating pain. Within a day the pain was gone and within the week the cloudy vision had resolved. Zero residual damage could be seen on follow up. My neuro said that its possible it resolved not just so quickly but also so thoroughly due to such early treatment. He said the latter result hasn't been proven in studies, but he often sees this in his clinical practice.
I've only seen the MS specialist once and follow- up after tests he ordered is in a couple of weeks.
DV has been here for a year, to varying degrees, but got worse this past week. Neuro is not easy to see (and he's on vacation right now) so PCP agreed ophthalmologist may help.
Shoot. Was so excited by the magic prism (thought it may even help with daily nausea) but looks like I would need to purchase two pairs of spectacles; one prismed and one without.
New to MS dx (although not new to the symptoms - 8+ years) so not on DMD or anything yet. 4 MRIs, CSF, neuropsychologist: all say MS. Specialist follow-up still 2 weeks away.
Thank you for valuable feedback.
Just remember to tie them on securely if you go canoeing!
Just remember to tie them on securely if you go canoeing!
Thank you, Pastor Dan. My husband thinks I should go ahead and get the two pairs (one with, one without). I was just excited at how it cleared the DV but then wondered what would happen if DV resolves - and now I know!
Thanks for sharing how they work for you. P.S. I don't go canoeing but I'll be careful - especially given the cost :-(
One other thing: this is the third neuro I've seen (but the first who specializes in MS). He seems to be as disconnected to me as a whole patient as the others - is this typical? Or am expecting too much? My PCP is great; maybe she gives me higher expectations of level of care than I should have... What has been your experience (if you don't mind my asking)?
As always, thank you all.
What do you mean by 'disconnected to me as a whole person'? I'm happy to share my own experiences, I just want to make sure I know what you're saying first.
Hi, Millie. Over the years we've had dozens, maybe hundreds, of questions and comments about neuros, their personalities, their lack thereof, their interaction on a human level with their patients, and on and on.
My own opinion is that neuros tend to be far more detached than most doctors, and that's saying a lot. I went through at least 6 or 7 before not only getting a diagnosis, but also finding someone who listens and understands, not merely waits till I stop talking to say something he or she considers profound and all-encompassing, at which point I am cut off from further discussion. Luckily, though, I did finally find the right one, and I do feel listened to and a part of the treatment process.
Perhaps this is not what you're alluding to. But if it is, there are loads of other doctors out there. This can be wearying, but take heart.
The first neuro specialized in cardiology and despite two appts where he could not access my records, put it down to cardiovascular (non specific). So on to Nero 2 who had lumbar puncture and another MRI done, then dx MS on those results. He Rx Copaxone and told me to 'look it up,' which I did and read horror stories so did not start that. 2 months later at follow-up, he said it was probably good I didn't start it as there's now a pill - aubagio - which he Rx and again said 'look it up.' I did and monthly blood tests are needed for first 6 months but follow up was scheduled for 3 months. Also dismissed weird constipation that I've never had before as anything important. (Looked that up afterwards and see it CANhappen with MS.)
So on to neuro who specializes in MS. First appt. He ordered all new MRI, blood work and a (first) neuro psych test, physical therapy. Grateful for all new tests. BUT he didn't seem interested in me as whole patient. Some concerns I had don't even appear in the notes. I spent two weeks making a list of symptoms I have or have had (took me that long as both my husband and I remembered things.) to help with appt.
When I requested copy of records, he sent copy of his notes. Seems uncommitted to dx at times and then other portion talks of results that are atypical of MS (lesions scattered throughout juxtacortical, CSF tests positive for o-bands and other markers, etc.).
At appt, I asked if he would complete form on visit for short term disability claim regarding reduced hours and he said PCP can handle that. Wrote 'behaviour is childish at times' - not 'child-like,' 'childish.' My husband and I couldn't figure out what that meant so asked for clarification as no way I was submitting that to STD insurance. He had his asst call to say he would discuss that at follow-up (6 weeks away and a month past deadline for submitting information). FYI PCP is helping me and we got through first hurdle. He didn't or couldn't understand the STRESS that situation was causing me.
He's on holiday now so couldn't discuss worsening DV. PCP helped again. I so wish she was an MS specialist.
I think I mean he just isn't THERE. Don't want to keep changing dr. so just wondering if all neuros are like this and I just need to pick one and put up with it. Is level of care PCP gives so high, all others appear disconnected?
BTW, I'm not one who goes to the dr. for every sniffle or ache and pain. Used to be twice a year: yearly exam and yearly sinus infection. PCP said she knows it's serious when I visit. (This was disadvantage with STD - because I WASN'T going to dr. with every trip, fall, choking incident.)
Thanks again, everyone.
Thank you! You put it in the right words for me.
Felt like #1 wasn't interested because it wasn't Parkinson's (Michael J. Fox certificate proudly displayed in lobby).
#2 I already had experience with and know he does not like QUESTIONS, but he is local and PCP said he would definitely do lumbar puncture.
#3 is specialist but hard to get to. My husband has challenges of his own and it's hard for both of us. When he was no responsive, it was disappointing.
Doesn't seem to be many MS specialists in Oregon, and certainly none south of Portland. Nobody seems to know Salem is the capitol... You'd think there'd be some in the Capitol! Lol
I'm extremely grateful that PCP took notice and was committed to finding what was wrong. Only took 6 months from first visit to her saying, "something is very wrong," to dx.
Thanks for your insight - makes me feel better to know it's not just me!
No, not all neurologists are like this, though lot of people have to kiss a lot of medical frogs before they find the right one, sadly.
I'm concerned that you have a diagnosis and no one has helped properly guide you through your medication options. True, the neurologist may not have available time to do this, but at my hospital they have a dedicated MS nurse that meets with you for any and all questions, rather than just sending you home with a stack of industry pamphlets and videos.
All of the treatments have potential side effects. The only medications in the world without potential side effects are the ones without any effects at all. Of course, it's ultimately a personal decision if and with what someone treats their MS. But I hate to think of you only being shown two options without any real discussion to allay your fears or offer other DMDs that might be a better fit for you.
There are some (many?) in the forum who can relate to the frustration of finding a neurologist you are comfortable with. There are some amazing neuros out there and it's a terrible pity if treatment is delayed because of negative experiences and incompetent care. I wish I could send you to my hospital. Fancy a trip to Dublin?!
I will add one tip, though. If and when you find the energy or inclination to go to another neurologist, I think the general consensus around here is 'scrap over-detailed symptoms lists'. Doctors will get a bit swamped with that and seems to deal better with the 'bullet points' version. (Though, as you're already diagnosed and really have that now for STD, I'm not sure if the same thinking applies)
Here are some articles from the Health Pages you may find of use.
On preparing for a neurologist appointment:
On preparing a symptom list/timeline (written primarily for those in limbo, however):
Don't hesitate to get into contact with your local MS Society chapter. If you're a bit too exhausted to pursue a new neuro at the moment (would be understandable), they could pick up some of the slack in terms of letting you know of current treatments, local assistance programmes, perhaps even be able point you towards help navigating the disability system.
It's a big ol' mess at the beginning, even aside from the actual disease! But these things (darn logistics!) will smooth out a bit over time. Just pull up a stool and settle in here. I think many of us have had various and sundry freak-outs delayed by this little forum!
Thank you! If I wasn't too tired to fly! Or too poor right now... I'd be on my way to Dublin! Lol
The list I took was just bullet points: I'm beyond making anything complicated anymore. ;-)
I guess I'll have to follow-up with this one and see what happens. My medical insurance has a dedicated MS nurse team that I can call but they're the ones who pointed me in this guys direction. My husband is wondering if a different specialist at the same practice... We'll see.
Thank you for your valuable insight. I' so tired.
Blessings to you.