Hello,
I have a few questions regarding the Relapsing-Remitting form of MS that I hope somebody may be kind enough to answer.
For someone experiencing optic neuritis:
What is the recovery time (typical / range) for RRMS from experiencing symptoms to remission?
Does the myelin thicken again (presuming it thinned in the first place)?
What evidence of RRMS would be present on an MRI during remission?
Thank you.
Hi Nemo, I don’t have remissions as I’ve got ppms but will try to answer your questions.
I think the recovery time really varies in RRMS, from a few weeks to a few months.
I don’t think the myelin ever gets thinner, it’s just that the lesions become less active or in other words less inflamed, or the inflamation goes away altogether, but the damage to the meylin sheath stays the same.
I think on an MRI the active lesions show up brighter than the non active or less active lesions.
Please anyone with RRMS post and say if I’m wrong … it’s important to get the info right!!!
Nemo, look on the ‘What is MS?’ section of this site (link at top of page). Also look at the info on the MS Trust site which is also very good.
Hope this helps,
Pat x
On the discussion on the radio 5 show the other day the specialist that was doing the show said that the Myelin gets thinner with the more attacks you have and the myelin finds it harder to recover with the more attacks. With rrms the relapses can last from days to months - nobody’s rrms is the same so for some people symptoms last for a couple of days others its months. The active lesions do show up brighter on an MRI scan than non active lesions so Pat is right. Hope that helps
Thank you for your replies. A bit of background behind the questions …
Several years ago, I had problems with my eyesight that seemed to go beyond normal ageing. My left eye has been poor since childhood, but my right eye was always very good. However, within the space of a month or so, I lost most of my ability to focus, my acuity dropped from an easy 6/4 to a difficult 6/6 (pinhole-corrected and missing some of the letters), my colour perception deteriorated and (most obviously) my dark adaption went from owl-like to bat-like (the road disappeared when I drove into forest-dappled sections, I couldn’t see in anything less than brightly-illuminated streets and most of the stars became invisible to me). I had an Amsler Grid test and noted that the centre appeared distorted and the grid was brown rather than black. About a fortnight after first examination by an opthalmologist, the consultant noted that the optic disk of the affected eye seemed paler than the other eye. Although, no photographs were taken, I got the impression that the pallor became more noticeable as my vision got worse.
A couple of things struck me as odd: the first was that the opthalmo-neurologist who followed up on the consultant’s observation didn’t believe that my eyesight had ever been 6/4 and thought my struggling 6/6 was pretty good (whereas to me it was like Registered Blind!!!). The other statement he made was that the pallor had probably always been there, as many opthalmologists/general practictioners/opticians would have probably just thought it was natural variation and not commented (despite it being “quite noticeable” by this stage). I queried this, as I was pretty certain that my previous RAF medical examinations went into some detail on the differences between my right and left eyes. I also stated that I was pretty sure my eyesight was better than 6/6. He re-itererated his previous statement and again rejected my ever having 6/4 vision in the right eye.
I obtained a copy of my RAF medical records, which confirmed that my right-eye had always been 6/4, with Colour Perception 2 (CP2) which meant very good colour vision (only aircrew and some specialist trades were tested for CP1). Furthermore, although other differences between the two eyes were noted, there was no mention of the optic disks being different. However, one thing did surprise me was that, a few years prior, I had seen an opthalmologist after experiencing some visual difficulties and could only manage 6/9 for a short time. I’d also had infrequent episodes of weakness and other MS-like symptoms (eg, fatigue and L’Hermitte’s sign), all of which I’d completely forgotten about. I sent the relevant records to the neuro- opthalmogist but got not response.
Subsequently, I was referred to my local neurology department and after a few months I had an MRI. The MRI showed nothing of concern but did note that I had more “focal white spots” than would be expected for my age. Amongst other things, the neurologist ruled out MS and my changes in vision were written off as “just one of those things, but nothing to worry about”.
By the time of the MRI (the NHS sometimes rivalling glaciers for rapidity) my vision had improved markedly - most of the stars were visible again and my acuity had improved to 6/5; I’ve never recovered accomodation, though, and my vision isn’t as sharp (even corrected) as it used to be. Interestingly, despite my supposedly always having a difference in optic disk brightness between the two eyes, no recent examination (including retinal photographs) have detected any difference at all.
Recently I’ve been having problems, primarily with fatigue, pain, weakness and instability. I’ve also had occasional bouts of eye-pain (including one episode of not being able to see things clearly (I felt like I was having to look round things to see them)) and facial pain. Initially, these were suspected to be due to neck and back problems. However, although recent MRIs confirm I do have spondylosis, it doesn’t appear to be clinically significant. Consequently, my GP intends to refer me to a neurologist for further investigation. My wife, who has a bit of relevant training, suggested that I might want to chat with my GP about whether MS might be back on the list of possibilities.
So, if previous patterns hold, given that I am likely to be examined by the neurologist when I’m improving, I’d like to know how regressing-remitting MS shows up in tests during remission.
Hi I had acute optic neuritis (AON) (in one eye) that reduced vision to being able to perceive a daylight window versus something in front of the window. The worst sight was a a week after it started. Typical AON is definitely improved after 1 month and then improving for 12 to 18 months. There is usually residual damage as remylination is usually not complete.
It was strange during the first couple to months when car lit headlights and stars were invisible to the bad eye.
I too find the comment on acuity by the opthalmo-neurologist (who followed up on the consultant’s observation) odd. 6/6 is generally regarded as good, optometrists take that as the goal for optic corrections but 6/6 (or 20/20 in feet) but it isn’t uncommon to have better than 6/6. Pale optic discs are an accepted sign of an unhealthy eye - I would be suprised that RAF medics missed it.
MS like inflammation is only one possible cause of ON. But with me and, I think it’s standard, other causes were looked for diligently.
I saw a research presentation to the effect that typical AON was the “model” for other relapse/remissions. Though of course not all AON is typical and a “model” of relapse/remission won’t always be a close fit.
Mylin does get repaired but usually not perfectly.
After remission the imperfect repair at a severely inflamed site becomes a lesion that shows up on MRI. My neurologist told me I had old MS type lesions on the MRI scan.
[quote=“Vithfari”] Hi I had acute optic neuritis (AON) (in one eye) that reduced vision to being able to perceive a daylight window versus something in front of the window. The worst sight was a a week after it started. Typical AON is definitely improved after 1 month and then improving for 12 to 18 months. There is usually residual damage as remylination is usually not complete.
It was strange during the first couple to months when car lit headlights and stars were invisible to the bad eye.
I too find the comment on acuity by the opthalmo-neurologist (who followed up on the consultant’s observation) odd. 6/6 is generally regarded as good, optometrists take that as the goal for optic corrections but 6/6 (or 20/20 in feet) but it isn’t uncommon to have better than 6/6. Pale optic discs are an accepted sign of an unhealthy eye - I would be suprised that RAF medics missed it.
MS like inflammation is only one possible cause of ON. But with me and, I think it’s standard, other causes were looked for diligently.
I saw a research presentation to the effect that typical AON was the “model” for other relapse/remissions. Though of course not all AON is typical and a “model” of relapse/remission won’t always be a close fit.
Mylin does get repaired but usually not perfectly.
After remission the imperfect repair at a severely inflamed site becomes a lesion that shows up on MRI. My neurologist told me I had old MS type lesions on the MRI scan. [/quote]
Thanks for the reply, Vithfari. I have to confess that I don’t think the RAF medics missed anything. Given that that nobody has seen it during my last 3 eye tests (and were asked specifically to look for it during the last two) and that my vision was improved at each test, Occam’s Razor strongly suggests that there was no pallor for the RAF medics to miss.
My biggest problems with a lot medicine are:
a. timescales: The NHS is a bit of a mixed bag, but I find some of the initial response times a little bit strange in that they do not cater for the known timescales of disorders; on occasion it seems a bit like getting an appointment with the maternity unit for 10 months after conception and then have them say “But you’re not pregnant!”. Private medicine can be quicker, but it’s just taken me over 2 months to sort something else out that should have taken no more than a week.
b. variability: A more general problem is that some diseases (like RRMS) themselves vary in time and with situation, eg vary with temperature, lifting, exercise, etc, and these conditions don’t necessarily occur during a doctor’s surgery! However, it often seems that many medics do not seem to understand that feeling fine “now” does not mean the problem didn’t exist and won’t re-occur in the near future.
c. generality. It often seem to me that that medicine lacks the equivalent of a “Systems Engineer” who has a good grasp of several specialities and sees the interactions between them at a system (holistic) level. IME, things that aren’t “textbook” tend to confuse specialists.