First diagnosis finally

[BabyOleg]

I don’t no how I feel about this. Not sure I lf I am happy or sad. But today after months of eye hospital visits I have been diagnosed with severe autoimmune inflammatory eye disease and given immunosuppression eye drops and more steroids.

My rheumatologist has now handed me over to the connective tissue disease specialist who has took over my care now and I see him next week and hopefully will get a bit further with him too..

A little word of advice to everyone out there suffering and with normal blood work. Don’t give up. I didn’t.. and I am finally getting somewhere after nearly 2 years or hospital appointments different consultants and lots of umming and arring

[Ingrid1234]

Hi,

Sorry to hear but hospital ophthalmologists are usually more exact with an eye disorder/disease.

The term, “severe autoimmune inflammatory eye disease…” would be too general for me and many others here.

I have several eye conditions and all have distinct names requiring different approaches and therapies.

This eye specialist should oblige.

Also note that once you’re diagnosed with one confirmed AI inflammatory disease others unfortunately start to kick in eg the CTD or MCTD? Sorry to sound like this but?!

So us lupus sufferers are all in this together but thankfully it’s taken two years 👍

Others here here have waited decades for a diagnosis of sorts.

As for the “umming and arrring” it’s usually from the GPs and others, many of whom refuse to refer and continually gaslight.😩

Keep firing and I wish you well.

Many here are very frustrated but glad that you’ve a diagnosis.

Xx

[BabyOleg in reply to Ingrid1234]

I believe she has a name for it, but I think she decided better not to send me away googling at the moment - she is waiting for swabs to come back to rule out infection even though she said it will be negative but wants to be thorough and has said will write everything in a letter .. I am intrigued but atm I think she was right the worse “severe” was enough for me to deal with today and she’s right in that I would just go away Googling x

[Ingrid1234 in reply to BabyOleg]

We all Google 🤣🧐, docs included.

Good search engine.

Many doctors also Google. 🤣.Some will not admit it🤣.

Saw my GP two years ago about my complicated rashes but he had to Google Dermz (dermatology New Zealand website) for printouts.

A most helpful, honest doc ref my SCLE which was flaring at the time.👍 We googled in his office together.🤣

[BabyOleg in reply to Ingrid1234]

What we would do without good old dr Google ay haha!!

[Ingrid1234 in reply to BabyOleg]

There is Bing! DuckDuckGo! etc but not as good.🤣

[BabyOleg in reply to Ingrid1234]

If I remember rightly - ask Jeeves?? That was a thing for a while many moons ago hahaha

[Ingrid1234 in reply to BabyOleg]

Yes.🤣Long retired! Mr Jeeves!

Just wondering whether the Royal College of Ophthalmologists would have something on “inflammatory AI eye diseases”?🧐

You’ve got me going,🧐

[BabyOleg in reply to Ingrid1234]

Interestingly enough I have been trying to research tonight and all that it really comes back with is some sort of wierd and wonderful disease Iv never heard off and sjrogens (but i thought that was in a different bracket)

[BabyOleg in reply to BabyOleg]

Oh and uveitis ..

[Ingrid1234 in reply to BabyOleg]

Yes, “uveitis”, so many causes and types.

Uveitis is inflammation inside your eye.

From the NATIONAL EYE INSTITUTE:

nei.nih.gov/learn-about-eye...

All good stuff.

[BabyOleg in reply to Ingrid1234]

I know it’s not uveitis as I was under the clinic not long ago, I do have episcleritis, thankfully not scleritis. - oh and that schermers test is horrible I had that done today. Think that is where the word “ severe “ came about. After my tearing result was only 4mm

[Tangerine25 in reply to BabyOleg]

Oh yes the Schirmer’s test isn’t fun! At least you got it over with now. I had it done over a year ago and same result for me 4mm in right eye and a little more in left one. I was told to use preservative-free eye drops every couple of hours too, and still do although sometimes I forget, because eye disease not severe enough yet to require scleral lenses or the very expensive eye drops.

My ophthalmologist agreed with me that it looks likely I have Sjogren’s disease. I was referred there in the first place because I almost completely stopped producing tears and that’s not normal especially at only 33, that coupled with severe dry mouth/nose/trachea and skin and tons of cavities despite exemplar buccal hygiene. Like you I didn’t know how to feel to have a name for something that has been gradually become impossible to ignore.

Blood work was negative for Sjogren’s markers so my previous rheumatologist just told me I didn’t have it and even if I did he wouldn’t treat me. He was a really great guy lol and that’s why I am seeing a new one soon. My dryness symptoms haven’t improved only gotten more severe so I am fairly sure I have Sjogren’s.

I hope that what you have will be easy to manage and that you have a name for it soon.

Sending warm hugs 🤗 xx

[Ingrid1234 in reply to BabyOleg]

From the American Family Physician online journal:aafp.org/afp/2002/0915/p991...

Old 2002 paper!

[BabyOleg in reply to Ingrid1234]

Your amazing! - love a good bedtime read.

[MEGS53]

Well done for having the tenacity to fight through until you got a believable dx. I take my hat off to you BabyO!!

Maybe not the right time to have a party (only here are peeps happy to get these sorts of dx 🙄) but at least you know now where you stand and can move forward in a positive way.

Take care, 😘

[BabyOleg in reply to MEGS53]

Thankyou! x I’m open to the idea of a party though I could do with letting my hair down after this year!! Lol!!

[MEGS53 in reply to BabyOleg]

Can I join you?

😂😂😂

[BabyOleg in reply to MEGS53]

Absoloutly haha

[MEGS53 in reply to BabyOleg]

Thank you!

😘😘😘😘

[KayHimm]

You have hung in there despite such frustration and confusion. I admire your honesty with your doctors. You have been a big challenge - a position no one wants, right?

What is the doctor’s specialty who is responsible for your care now? I thought rheumatologists were the experts in connective tissue diseases. Maybe you are going to one with a super expertise? Do you have an ophthalmologist too? They told you were rare. Rare sense of humor and tenacity too!!

Many 🫂s to you.

Kay

[BabyOleg in reply to KayHimm]

Hey!! Yes so I have and still am a medical mystery. I’m literally learning so much along the way though. So I went to see the senior consultant opthamologist today they requested to see me as they had noticed I had been bouncing around between eye hospital emergency department and hospital a and e with my eyes and wanted to get to the bottom of what was wrong. I had some horrible test done (along many others) today where they put paper in my eyes and tests to see how many tears were produced in 5 minutes. To my suprise my left eye basically barely even produced any and my right wasn’t great but did produce some. And inflammation is so bad it’s caused the whites of my eyes to swell and go so red and uncomfortable. (It was ideal for Halloween, nothing else though) haha!!

Iv had 2 courses of steroids and 1 course of anti inflammatory drops and they respond untill I stop. So now I am on my third course of steroids and immunosuppressive eye drops to see if it will keep it at bay.

So I have an opthamologist, dermatologist, recently my rheumatologist has handed me over to a connective tissue disease specialist who I meet for the first time next wed and am under his care now rather than the rheumatologist.

Never heard of this before.. but hey.. I’m still new to this x

He has said he doesn’t want me put through any more tests now - thank the lord! Because quite frankly I’m sick of the sight of hospitals for the time being lol

How are you xx

[KayHimm in reply to BabyOleg]

😅 I am sure you would rather see the beach! I definitely hear they are on alert with you. Glad the head hancho stepped in. With rare conditions, your doctors need lots of experience - can only get thorough years of treating complicated patients. One of the few good things about autoimmune conditions is that, when they see conceding inflammation as they did with your eyes, they do get interested. Lots of bad stuff, but we are considered interested patients.

I wonder if the rheumatologist has sent you to another rheumatologist with more experience in a group of autoimmune diseases. Or maybe someone with vascular expertise? You will find out. It is hard to be bounced around, but they clearly want you to get the best care.

I am fine. My cancer treatment was straight forward. It was weird being a boring patient with a serious illness. 😅. Those of us with autoimmune disease are used to being unusual. But glad treatment was successful.

Hope your next appointment with the mystery specialist goes well.

😘😘

[BabyOleg in reply to KayHimm]

Glad it went well and smoothly!! I wish I was a boring patient, so much so that I was actually fit and well. 😂

is that treatment done now? Or is there more to come? X

Yeh I researched him (like everyone I am referred to) I like to do my home work haha.. he has a special interest in AI and vasculitis and is on the myosotis committee. So I believe he is a good person to see.

I’m finding it really hard to remember every 2 hours to put drops in my eyes 😂 going to have to set myself an alarm clock I think

[KayHimm in reply to BabyOleg]

Every two hours?!! That is a lot. Yeah, set an alarm clock with your favorite music.

That makes sense. You are seeing someone with more expertise in autoimmune conditions and vasculitis. You will likely be watched very closely for other symptoms.

Yes, treatment is finished. I just have follow up scans and scopes and visits.

👀 x 2 🥁= 🥇

[KnitSewPurl in reply to BabyOleg]

hi Baby Oleg , glad you had a diagnosis for your eyes . As for the dermatologist, I had one brought into the clinic when I attended once because I was having a major flair up I had loads of lesion spots all over my body and they needed to identify which was lupus and which is not there was one spot the lupus spot was on the mole and it was very worrying. and it was growing quite fast.

I had always had dry eyes. she'd no tears unless it is a really really sad movie. was prescribed and told to use artificial tear drop. I use it occasionally when it is really bad trying to keep up with every thing in my life is almost impossible. Praying that all goes well xx

[PositiveT]

Hello. Keep on going my friend. We are all in this together on our own curvy and sometimes holly paths. 🌻

[Oshgosh]

I’m pleased you finally got a diagnosis,but I understand your mixed feelings.It’s good that you’ve now have access to medication and medical consultations.

When I was 26 I had my tonsils out,it had come on fast.

Since then I’ve had various random symptoms,these were treated on a symptom by symptom basis over the years.

When I was 65,what I thought was my asthma started to worsen.

Cutting it short, I now have a diagnosis of undifferentiated Connective Tissue Disease.

This has caused Interstitial lung disease.

I’m now on DMARDS etc.

On oxygen for when I exert myself.

So ,from working 30 hours and being active,now. I’m restricted.

So it’s good that you have managed to be diagnosed early

Sorry to ramble.

Look after yourself x

[Pumpkin2009]

Wishing you all the best care.

Healing hugs.

[Raven_claw]

So glad you are starting to get somewhere with diagnosis. Hope you get on the right course of treatment and your symptoms improve. Keep up the good fight.