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keratitis and ms

Hi

I’ve just been told that I have neurotrophic keratitis (please forgive any spelling errors!) and have some eye drops on permanent repeat and have to go back to hospital for a field vision test. Just wondered if anyone knows if this is linked to MS. I think it is, as the eye pain started at xmas when I collapsed with what I believe to be a relapse. Each time I have a relapse it seems to leave me slightly worse off each time than before and the eye pain has been rumbling on since xmas. I’ve been to eye casualty three times and seen my optician twice but it has taken me six months of complaining to my GP to get a referral to an opthamologist. I’ve had double vision in the past and difficulty with focusing. It’s funny because the opthamologist asked what symptoms I was seeing a neuro for and I reeled off the usual - fatigue, pins and needles, bladder and bowel problems, balance and coordination etc, etc and straightaway he said ‘oh, they think you have MS then?’. I’m wondering if the eye problems are all connected- has anyone else had a similar problem and did it resolve itself alright eventually?

Thanks for reading

Dianne

Hi Dianne,

I didn’t know what this was, and had to Google.

I’ve never been diagnosed with it. However, I’ve had repeated bouts of eye inflammation (always the same eye) that resemble conjunctivitis.

Despite appearances, these weren’t bacterial conjunctivitis (swabs from my eye actually showed fewer bacteria than is usual for most people - therefore not an infection).

An extremely rude, chauvinistic and misogynistic consultant at the eye hospital was more-or-less convinced it was a rare complication of chlamydia, and presribed antibiotics for that, even before the results came back.

As I’d not been sexually active for some years, I was sceptical, but had no idea how long it might lie dormant, so went along with this. Surprise, surprise, the antibiotics didn’t help, and the test showed I DIDN’T have chlamydia.

The horrible consultant nevertheless pronounced that I was much better, and therefore that the antibiotics had worked, even though I didn’t have the condition he’d prescribed them for. :frowning:

It’s episodic anyway, so personally, I think any improvement was coincidental, and nothing to do with the antibiotics. In fact, I don’t agree that it HAD improved, when he saw me the second time, but he seemed to have a vested interest in recording that his treatment was right, and that I’d responded.

Needless to say, I’ve never gone back, but just endure the regular flare-ups now.

It’s never been officially diagnosed as anything. The best my doctor has been able to come up with is that it’s some kind of allergy, but I’ve never heard of anyone being allergic in only one eye before!

When I Googled keratitis, I noticed that the images and descriptions of symptoms look very similar, and also that it responds to steroid eye-drops - which are the only thing I’ve ever had that helped (almost instantly!)

However, you can’t go on them long-term, as it’s associated with risk of cataracts and glaucoma, among other things - I expect you already know all this, if you’ve been treated for keratitis.

Like you, I’ve wondered if the episodes could be linked to my MS. Even before my diagnosis, I wondered if the repeated eye inflammation was a sign of “something serious”.

When the truth emerged that I had MS, I naturally assumed it was all connected somehow. But medical opinion still seems to be “No”.

I’m still getting fobbed off with: “allergy”.

Tina

Hi Dianne

Yes I have this condition in my left eye, I’ve had it for around 14 years now but was never actually told, I was always told my synptoms ect were a mystery and no-one could explain or diagnose my condition, despite seeing numerous consultants at numerous hospitals over the years.

I was prescribed predsol forte drops on and off over the years and ironically it was only after being referred to a neurologist in Feb that he noted it was in my medical records from St Thomas that I had a previous history of keratitus and anterior uveitus , all news to me ! A quick google did suggest neurotropic keratitus can be related to ms.

The damage has already been done to my cornea though due to the scarring that occurs and I’ve been left with a corneal opacity which means its near impossible to examine the back of my eye now.

The synptoms have come and gone over the years much like relapses I guess and I only get pain occassionally, mainly behind my eye, and only for a few hours at atime ? The only option I’ve been given is to eventually under go a corneal transplant, I haven’t been prescribed any meds for it for a few years now. I think I was left to slip through the net though, no clear diagnosis and no communication between hospitals and consultants, so I was left in limbo not really knowing what it was, whereas yours has at least been picked up on early and for you the prognosis and management of it should be alot easier than mine !

I do beleive the onset of my eye problem coincided with the start of my neurological symptoms and although I’ve not been dx with ms officially ( I’m to see the neuro on July 4th for my dx ) I think it’s a given that ms is what it will be.

Take care …

Ness x

Hi both

Just wanted to say thank you for replying and I have PMed you both. Thanks again x

Hi All x these bouts of ‘inflammation’ wherever they are in the body seem to be relatively common. I had a ‘cyst’ removed from my sinus a few years ago - the biopsy came back saying ‘sterile inflammation’. I laso had 2 lots of breast surgery - mammary ducts removed and that came back with ‘sterile debris’ sterile inflammation (I had had a dodgy little lump removed just before though so the surgeon said the damage to the ducts was caused by this)

He explained that where these areas of inflammation flare up - the body geos into a type of ‘autoimmune mode’ ie no infection no bacteria - just the body attacking itself. Maybe its all connected - who knows! xxxjenxxx