Meine Augen, ich brauche etwas Unterstützung, bitte antworten Sie!!

Allergien, Blut und Immunsystem
1

As you already know, sjogrens usually attacks the eyes.  It can effect other certain areas of the body but it's prominent in the eyes. That said, I've been dealing with both eyes having a scratch on the corneas.  It's a long process for the healing to take and it's also causing other symptoms to appear.  Whenever I talk to my cornea specialist, he always says, "it's the sjogrens, you should hear the stories of what other's tell me".  

My current problem, along with the healing of the corneas, I'm dealing with other things going on.  Have any of you felt like there were very thin wire like objects that pop through the inside of the eyelids?  That's waht scratched my corneas.  My eyelids feel heavy and swollen then  that's when the inside of my eyelid cracks and the wire-like substance pops through.  Okay, that symptom has subsided and now, I'm feeling like there are round (egg type) underneath the thin lining of the eyelids.  It's an awful feeling because after that symptom, it feels like there's worms underneath the underside of my eyelids.  I can feel them but they aren't easy to see.  I've read if one has a parasite, they are able to hide easily.  They also play havoc on the immune system.  I've told my doctor this and it's like the same thing each time, "it's the sjogrens" calm down!

So, my question, if you've had strange sypmtoms like I've been experiencing, would you kindly share your opinion and how you've been able to take care of this problem?  Even if you don't have the same symptoms, would you please give your opinons as it might be able to help me.

I'm thanking you in advance for your input!

Hugs,

Frustrated

2

I've never had it that bad, poor you..hope you get many answers on this blog that will really help you...the Fibro that I have is worse than the Sjorgrens thank God I don't ever get horrible symptoms like you...I only take drops for dry eyes and artificial saliva.daily...and have for years....apart from once feeling that my eyeball was scratched it was a bit of discomfort for quite a while but that was a few years ago...be blessed, hope you get do e relief soon..xxxx Australia

3

Hi there.

That sounds awful, although I have never experienced that sort of sensation in the eyes. I do, however, suffer dry, itchy eyes, constant feeling of tightness and pressure, as if my eyes are going to pop out of their sockets. Not pleasant at all. That said, I was diagnosed with Blepharitus before the Sjogren's, which causes inflammation of the eyelids and small cysts to form under the eyelids and corner of lower lid. I have lost most of my lashes due to scratching.

I would also like to say that I have swollen lymph nodes in my neck and groin. I had an ultrasound 14 months ago and was told not to worry as everyone can experience swollen glands of some description. Like most patients, when your doctor tells you not to worry, you don't question them. After all, they know best.

However, the problem persisted, albeit I had no pain, merely discomfort due to tightening in the area around the glands.

Before I was finally diagnosed I had been to my doctor on numerous occasions, complaining of one symptom or another and had had several tests at various hospitals all coming back normal. Despite this, I refused to give up as, like most individuals, we know our own bodies, we know when something is not right. For the sake of my own peace of mind, I had to pursue it further, even though I was beginning to feel that my doctor had me down as a hypochondriac, wasn't taking me seriously.

That said, if it wasn't for the intervention of my wonderful optician, I might still be wondering, waiting and being palmed off with pills to ease the symptoms and not treat the underlying cause.

I would advise you to keep a diary, noting down when you experience these sensations and how long they continue.

It is all very well for doctors to attribute every new symptom or issue as being related to Sjogren's but I would also discuss the issues with your rheumatologist and ophthalmologist. After all, you are the one feeling these dreadful sensations and I am not in the least surprised that you are, "frustrated".

I wish you good luck.

Do let me know how things go in the future.

Mermaid1962

but, like yourself, any time I have questioned this, I have been told it is the Sjogren's.

 

4

Mermaid ~

Thank you for your response.  That's a great idea to keep a diary regarding the symptoms.  The symptoms are every couple of weeks and consistent!  I am very excited that you gave me this idea because perhaps if I have it noted, they very well have to take a deeper look into this "diagnosis of sjogrens".  I really, really am sick and tired of all this and I hope it's nearing the end!  (Not death, the end of this awful affliction!)

Again, thank you for your response!

Warmly,

Frustrated

5

Christine ~

Thank you for your response.  I'm sorry you are suffering from the awful Fibro!  My friend has that and she's always in some kind of pain.  I hope you're not in pain on a daily basis.  It's my hope that the medical field would take into account that auto immune diseases need a closer looksee and help us deal with these afflictions!

Thank you  again for responding.  Please keep in touch as anything anyone has to say is comforting. God Bless

Frustrated

6

Hi there.

You are very welcome. I do hope you find the answers you need.

Incidentally, excuse my earlier typo, it's Blepharitis. Do check it out as it is apparently very common in people with Sjogren's.

Take care.

Angela.

 

7

Hi There, I can't relate to the sensations you are getting but a quick google search brought up something called Thelaziasis, if you google it and click in the wikipedia site it mentions symptoms as:

In animal and human hosts, infestation by Thelazia may be asymptomatic, though it frequently causes watery eyes (epiphora), conjunctivitis, corneal opacity, or corneal ulcers (ulcerative keratitis).[1] Infested humans have also reported "foreign body sensation" – the feeling that something is in the eye.

Diagnosis involves simply examining the eyes and nearby tissues for the worms. Adult Thelazia are very active, one author described T. californiensis as a "short lively piece of nylon fishing line about 10 mm long."[5]

Maybe you should get a second opinion, its easy for Dr's to explain away every symptom with an already diagnosed condition. Failing that it may well be damage that has caused nerve problems and what you are feeling is nerves misfiring combined with dryness. I get all sorts of wierd sensations and pain all over my body with no reason as to why. I get sharp, stabbing, burning, crawling, cold sensations in different places and i can only imagine its nerves as there is no logical or visible reason for them.

Good luck I hope you find some relief.

8

Just a quick point about Thelaziasis, there is very few cases and I think most in Asia

Another site says:

 the most common predisposing factors are unhealthy living conditions and the surrounding environment. 

Cattle rearing, contact with stray dogs, mountainous terrain, and rainy season make the humans vulnerable to ocular Thelaziasis. Conjunctival and cornel injuries, traumatic conjunctivitis facilitate the introduction of the larvae into the sub-conjunctival space and vitreous cavity.

9

Thank you Charlotte. I will look into the  Thelaziasis and see if I seem symptomatic to this!  I really appreciate that.  Any new avenue for me to check out is possibly one step closer to a dx and final hope/help!

Again, thank you for taking the time and looking this up for me.  I am forever so grateful.

I will keep you posted as to what transpires!

Frustrated

10

No problem at all. If you do read about it and do think its likely perhaps contacting a tropical disease type hospital maybe helpful.

I dont know if youve ever travelled to asia or similar countries or had anything to do with cattle/stray dogs etc but if you have it could be a possibility. 

Good luck 

 

11

Hi Charlotte ~

After reading up on this, I'm almost sure this is on the right tract.  I told you about that dog that my friend has and what it did to me and also, my pup was a rescue dog and came from an enviornment with questionable living conditions.  The rescue dogs were all strays....and I know that the surrounding space was somewhat unclean.  

So with all this said, I'm going to definitely follow up with my doctor or perhaps I will go to the U of M hospital that has an infective disease dept and with hope, I'll get some answers, finally!

Again, thank you, Charlotte!  You've been so very helpful.

Frustrated

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12

If you have Sjögren's you should be seeing a rheumatologist who's j

13

When you have an autoimmune disease like Sjögren's I find the rheumatologist needs to be prompted to treat, it's all very well them saying "it's the Sjögren's" but they should also rule out other conditions and also try different treatments for the terrible symptoms you have. My Sjögren's give me dry eyes, if I avoid makeup, drink loads of water, wear sunglasses, wear my prescription glasses when needed and get plenty of sleep they are manageable. The unmanageable symptoms were the joint pain which required other treatments that said, I was sent to an eye doctor who thoroughly checked my eyes for any other problems and sent me for an MRI to ensure the eye structure and brain etc weren't involved also a trip to the dentists to check all the salivary glands, I think you need everything else ruling out, then some pressure on the rheumatologist to treat, good luck x

14

Jenny ~

Thank you for your response.  I agree that the mere passing off that it's Sjogrens sounds almost a bit on the lazy side as far as my doctor goes.  I think I will contact my Rheumi and have some things checked out, that's a great idea!  

With your disease, sjorgens, do you have any of the symptoms I've indicated?  I mean, the fine wire feeling and can actually pull out this fine wire and also the round egg like things and all the other stuff I've said?   I feel pretty much alone.  Although I must admit that it helps to have all of you that respond to my discussion!  I thank all of you for this.

Anyway, Jenny, I'll let you know what my Rheumi says.  Meantime, if you read up on any new developments on sjogrens or hear anything, please write to me.  

Thank you,

Frustrated

15

Hi, yes the eye symptoms can be quite weird, my symptoms have ranged from permanent blood shot eyes, extremely itchey eyes, kaleidoscope migraines, pressure behind them, really sharp pin like stinging under the lids, crawling under the lids. Unfortunately I'm not great with getting eye drops in them and they make them more blood shot and sore! But the drinking LOADS of water does help. However the eye problems are not my most troublesome symptoms it's the fatigue, repeat infections, joints and gastro problems had a great few weeks of none of these symptoms as I've been on prednisone (steroids) but I'm only on a 5 week course and will be tapering next week with no appointment until spring but they offered me a cortisone injection in my hips and tailbone which is kind of useless if it goes for the knees or hands next time! Anyway I am begging for DMARDs next time which are a bit more long term will let you know how I get on with "gently pressuring" them lol

16

Hi Jenny ~

Thank you for your response.  While I'm not happy you're suffering from sjogren's, I am thankful that the symptoms aren't in my head.  I mean, sounds like  you are suffering a great deal yourself.  I do believe, I'm either going to have to succumb to steroids or get back on methotrexate and plaquenil.  The steroids are too harsh and I have awful side effects from them.  Metho and plaq seemingly are the way for me to go.

The sjogren's gives you pain in your hips/tailbone and hands and knees?  I wish I knew exactly where sjogrens can affect the body.  I also have sarcoidosis so I'm not sure if my symptoms are from sjogrens or sarcoid.  

Anyway, I hope you're feeling better soon.  

Warmly,

Frustrated