introduction : french m?le, possible sjogrens

[Frenchguy]

Hello,

I am a young French man of 26 years. I apologize in advance for my English.
I suffer from a very strictest of dry eye for the past 5 months.

During a visit to my ophthalmologist, it directed me to emergencies.

At that time (January 2016), I had respectively 1 mm (left eye) and 3 mm (right eye) and Schirmer test, TBUT <3 seconds for each eye. But after 4 months, 0 mm in each eye.

The service ophthalmology at first thought to Sjogren's syndrome (my mother have multiple sclerosis and this sister, a myasthenia gravis).

Tests for Sjogren's syndroms and results:

Blood test:
- No anti-nuclear antibodies
- No antibodies SSA, SSB, RNP
- Sedimentation rate: normal
- Proteins test : normal

After these results, it gave me a lip biopsy. The result is a non-specific stade 1 on the scale of Christolm. Thyroid tests are ok.

Ophthalmology not knowing what to do, I was transfered to a great doctor in internal medicine.

It made me past a thorax scan which showed bilateral hilar lymphadenopathy 2 (12 mm and 17 mm) associated with a discrete interstitial syndrome (bilateral pleural ground glass in the upper lobes).

After all these tests (and no it's not over!), The doctor thought to sarcoidosis.

I spent a stepped bronchoscopy and a bronchoalveolar lavave.
5 biopsies have nothing demonstrated and the results of the washing or the values are in the standards.

I have to be hospitalized within 15 days to pass a PET SCAN, a biopsy of the lacrimal glands and specific blood tests at the hospital of Salpetri?re (Paris)

Note that I do not have a dry mouth, but I'm extremely tired for 1 month.
I did not really want to do a biopsy of the lacrimal glands, but I think I have not much choice.

I have to be equipped scleral lenses on 26 April. I have already carried out the tests, that's ok.
Do you know people with sarcoidosis with a dry eye as severe?

Medication :
- Oral Pilocarpine ==> stopped after 3 weeks, no effect
- Omega 3 capsules

Thank you in advance for your advice, David

[Nymph]

Dear David,

Bienvenue! Don't apologize for your English. There are many people here who speak other languages.

I am sorry that you are having such trouble with your eyes and fatigue, and that it is taking so long to find a diagnosis. I do not know much about sarcoidosis so cannot say. I know that there are other causes of dry eye besideds Sjogren's. However, with the severe fatigue it does sound like a problem caused by systemic disease and not limited to the eye. With time you may develop other symptoms which will help with diagnosis. Have you discussed punctal plugs and Restasis eye drops with your doctor to treat the dry eyes? It sounds like they are very severe so I hope that you can find something soon that will help.

There are a number of other young people here, including young men. I am 37 but have had symptoms for many years. Keep looking for answers because you will eventually find them. It is also important to find a doctor who will treat your symptoms even before you find a diagnosis. Honestly, sometimes it takes years to arrive at a diagnosis.

Bon chance,

Nicole

[Kathy57]

Frenchguy,

Welcome to the forum.  Your written English is far better than a few people I know who ONLY speak and write in English!  (But no-one on this forum😉). Lol

I'm sorry to hear of your troubles and at such a young age.  It sounds like you are receiving excellent medical care.  Congratulations!  Some of us have not been so fortunate.  They are taking you very seriously and that is so good.

I have terrible dry mouth (very bad) and am on Evoxac which helps.  My eyes are very dry but not anywhere as damaged as my salivary glands.  My Rheumatoligist has diagnosed me with Sjogrens even though my lab work is normal.  You can be seronegative and still have Sjogrens.  Not enough doctors are aware of this fact.

It has affected my sinuses, lungs, stomache, esophagus, etc.  I believe my asthma has been caused by it and so does my Rheumatoligist.  (My asthma doctor doesn't know anything about Sjogrens). Many doctors that I have seen here in the U.S. Do not know ANYTHING about Sjogrens and since it is an "invisible disease", it is easy for them to dismiss and not do further testing.

It sounds like you are really being looked at and taken seriously.  I don't know if you have Sjogrens but it CAN effect your entire Exocrine System, and that includes your lungs.   It hits everybody differently.  Some people have developed peripheral neuropathy with it and for some it was their first symptom!  thankfully, I have none.  (Knock on wood!)

I hope you get to the bottom of this and soon!  You sound like you might be in good hands. 

Let us know how things work out for you.  Please talk to us anytime you need to or want to.  There are some great people here!

Kathy

[bluegardenia]

hi french, im italian, so near you. seems that you are in paris, salpetriere its a very good hospital so im sure you will have answers. i had a great experience at the hopital americain in paris, extremely careful doctors and they know sjs. you could check also there.

[Kathy57]

David,

   I forgot to say that my eye doctor insists that I take 2000 mg of flaxseed oil daily, for my dry eyes.  It's not a cure but I find it seems to help some.

Kathy

[Frenchguy]

Hi all,

I order 240 fish oil capsules and 180 flaxseed capsules on amazon.

I use restasis for the last 4 months and nothing. Recently, i have lost my emotionals tears. I'm angry.

Tomorrow i go at Rouen Hospital to have my SPOT sclerals lenses. I hope that help me because my condition is not manageable with artificials Tears

I must stay to my house to be "more confurtable"


David

[Joe S.]

Hi, David. Welcome to the forum. There are a few of us guys here. I feel our numbers are growing. Maybe some day we we will not be so out numbered.

you can check out our signatures to see what we are taking. I have tried to stay away from traditional medicine because of bad reactions. So I use alternatives.

[SjoDry]

Welcome to our group David.

You have already learned what we all have...that Sjogren's (autoimmune illness) knows no geographical or physical boundaries. The journey to diagnosis & beyond is nothing, if not frustrating.
I hope that your procedure tomorrow will be helpful to you. Arming yourself with knowledge (which it sounds like you are doing) is helpful to understanding what goes with the diagnosis. The bottom line, as one person mentioned is that no matter what the diagnosis is, getting treatment is the most important thing.

Sounds like you are on the right track.
Take Care.
SjoDry

[Frenchguy]

Sorry to respond a little late,

After my hospital stay, I had a PET SCAN, a biopsy of the lacrimal gland and salivary gland biopsy.

The pet scan shows nothing abnormal, no nodes or other.

The result of the salivary gland biopsy is similar to the first biopsy (stade 1 chisolm)

During biopsy of the lacrimal gland, the surgeon has taken 2 fragments of the main lacymales glands and a fragment of the conjunctiva.

2 fragments of both the main gland are completely normal, no cell, no fibrosis.

The biopsy of the conjunctiva showed a very low presence of lymphocytes (level 1 non-specific - Chisolm) and a little bit of fibrosis in the "chorion" of the gland.

The doctors tell me that there's nothing for Sjogren nor for sarcoidosis. They put me on cortisone 20 mg / day, decreasing dose of 2.5 mg / week for 6 months.

The tiredness level, it boosts me but the energy is not natural. Regarding my eyes still debilitating drought ...

[cccourt1942]

If they gave you oral cortisone, ask for cortisone eyedrops.  This will give you comfort.  You cannot use them indefinitely.  Then use a non preservative eyedrop (available on Amazon) such as Alcon Naturale Tears.  These are in individual vials.  You may be in early stages...and damage can/will occur to your eyes.  I used the Alcon product for about 25 years until I was dxed.  By the time I was diagnosed, there was no tear covering on my eyes.  The Restasis did not make my eyes feel better than the Alcon drops, but they restored the lubrication covering my eyes.  After a full year the ophthalmologist commented my eyes were about 100% improved.  Still not normal...but improvement is wonderful to me. 

Sorry you cannot get a diagnosis of something. 

Sjoldier c3

[Dolly Dimples]

welcome french guy,
                 so many of us here suffer from dryness, I have it everywhere . You will get lots of help and suggestions here, and of course much sympathy..
                      Meanwhile , even if you dont have a diagnosis, you must get treatment for your symptoms, the rest will follow.
       Remember tho'  like everything else , what suits one person doesent suit another... Im in the UK.
                                                               Good luck, Dolly