Stonewalled by docs

[hopeforall]

I know many of you have had similar experiences but I just wanted to vent out my feelings this fine saturday evening.
I have had dry eyes, dry mouth, dry throat for about 2 months now and recently started noticing that my legs fall asleep much more often along with very occasional tingling in the hands and toes.
My lab tests (ANA, SSA, SSB, RF, TSH, CRP) were all negative and my MRI did not show up anything.

I met two Rheumatologists who said that they wouldn't recommend anything at this point unless things get worse.

I have met 3 Ophthalmologists who have asked me to continue with the eyelid scrubs(sterilid), warm eye compresses (medibeads) and artifical tears(Refresh). I have been diagnosed with Bilateral Blepharitis secondary to Meibomnian gland dysfunction.
I did a quick search and saw that a lot of people with Sjogren's do have the exact same condition.
Since my dry eye and dry mouth started on the exact same day, I pleaded with the doctor for a Sjo test as recommended by a member in one of my previous posts. But the doctor turned me down and asked me to focus my research on blepharitis rather than "unknown autoimmune causes".

My PCP said that this was most likely due to an allergy. I have bought a humidifer, an air purifier and have been using an Allergy nasal spray for two months now with no effect.

In all, after 2 months, I have pretty much exhausted all available medical care options and have no idea of what is causing these problems.

I am worried that I am makings things worse without pursuing any alternative treatments but I feel stupid trying alternative therapies for Sjogren's when no doctor I have met is willing to say that I  have an autoimmune condition (even though they don't seem to be able to give any other answer)

I recently came across two very different posts on this forum with questions very similar to mine (one person had a 9 year old daughter and was worried that she wouldn't be able to be a good parent. Another was a 21 yr old male who was worried that he couldn't focus on his education. I guess my situation is a little better but it's still bad all the same. I am a 27 year old male. I have been focusing exclusively on education and career over the last 10 years and was really looking forward to getting into a long term relationship this year, which hopefully ends in a marriage.

But, I am not so sure anymore. I don't know if I am going to be a liability. I don't know if sane people are going to be okay with getting into a long term relationship with someone who might have an autoimmune illness (I will be honest here and say that 2 months back, I wouldn't have really fancied someone with an unpredictable chronic condition).

Thankfully, I haven't had any issues continuing to work so far. I just try to focus on continuing my work and researching about Sjogren's diagnosis and treatments.

The Hannah Yoseph protocol suggested by chrisr seemed to be a reasonably safe try to me. So i asked my PCP about taking the Collagen Cocktail  + Magnesium + Calcium + Zinc + Probiotics. He seemed to think that based on my medical history, these supplements should be safe. I anyway went ahead and checked my Mag, Cal levels and found that both of those are on the higher side.
I am still deciding whether I should start it or wait it out for 3-4 more months.

Happy rest of the weekend you all!

[alwaysimproving]

Wow, how strange is it that three people have developed similar symptoms around the same time and sought out help from this forum at the same time? Makes me wonder if there is some kind of new allergen or product around that is triggering these sorts of reactions.

[araminta]

Re.the blepharitis -  Bluegardenia on this forum recommended tea tree oil to me for that condition.   It has to be diluted about 50:1 (she used saline but I actually used rosewater made with purified water).   Anyway I think it's got rid of the blepharitis over a 3 months period (though I do still have dry eyes).

I do sympathise, it's awful being uncertain what's going on and so many of us here seem to be like that.   Try to keep calm and upbeat, find things you enjoy doing, I think most people with SS manage to live fairly normal lives, especially if they can find good treatment for the individual symptoms.  This forum is a fantastic help.

[Jasper]

Many doctors mistakenly think that Sjogren's affects only tear gland (and no other eye glands). In fact, Sjogren's affects tear glands and Meibomian (oil producing) glands, and causes global tear dysfunction/tear film abnormalities.

From Medscape: 
"The keratoconjunctivitis in Sj?gren syndrome is classically described as an aqueous tear deficiency. However, this assumption has been challenged in more recent years; some studies suggest that pathologic changes induce global tear dysfunction, including alterations in meibomian gland function.[13] An analysis of patients with Sj?gren syndrome with aqueous tear deficiency (SS ATD) compared with non?SS ATD patients demonstrated increased evaporation in the SS ATD group relative to the non?SS ATD group.[13] The SS ATD group also demonstrated decreased meibomian gland expressibility with a deficient lipid layer.[13] "

Have you had a lip biopsy? Up to 50% of people with Sjogren's may have no antibodies to Sjogrens. Most (but not all) of these patients they will have evidence of Sjogren's Disease in the salivary glands.

Have you seen a Rheumatologist at a university affiliated medical center/clinic? They are usually more knowledgeable about Sjogren's than many other Rheumatologists.

I hope you can get some answers and find treatment for your problems.

[SjoGirl]

You might ask your docs how common it is for someone your age to have Blepharitis. Seems unusual to me and I do know it was one of the first signs that something was amiss.

That said, there can be other reasons for dry eyes and mouth, as my rheumatologist said on my last visit allergies can make eyes more dry. If you are maybe upping caffeine or not drinking as much water that could have an impact.

You didn't mention whether you have any muscle or joint pain, is that the case/

[SunshineDaydream]

Sorry to hear the doctors aren't offering you more meaningful treatment options. Some rheumatologists are willing to treat symptoms even if there are no conclusive SJS test results. Sounds like neither of of the ones you saw are in that camp, at least for now. Maybe as your journey continues and you eventually re-do the test, your test will change or the doctor you choose will change his or her mind about treatment. Neither scenario is not unheard of. In the meantime, the situation is certainly frustrating, and can be time consuming as well as expensive. Not knowing what is going on or having a definitive diagnosis can also be quite disconcerting. You may want to consider going to an ENT for lip biopsy if you don't want to wait a few months for re-assessment by the rheumatologist or if your next rheumatologist visit has the same result as the past ones.

I'm surprised none of the ophthalmologists thought you might be a good candidate for Restasis, a prescription anti-inflammatory eye drop. Maybe ask about that if you go back. Optometrists can also prescribe Restasis.

Luckily there are OTC remedies that can help alleviate some of the SJS and related symptoms, and hopefully you are finding some of them to be helpful. If lid scrubs, heat application and lubricating eye drops are all you are doing for your eyes and they are still uncomfortable, it may be time for you add eye gel drops and eye gel to your bag of tricks. Also, I have found Country Life brand Vitamin A at 10,000 iu (highest daily FDA approved amount) is helping with eye moisture.  In addition, I switched to BioGanix Ultra Omega 3 fish oil (two with breakfast and two more in the early evening) and have found it to be noticeably more helpful than my old brand.

Try to stay positive about the relationship situation. I and many others have married despite having an autoimmune problem or other chronic conditions. It can be hard to date under the circumstances as some may run away when they hear of certain problems, but others will understand that nobody is perfect, accept you for who you are and what you have going on, and stick around.

[hopeforall]

Re.the blepharitis -  Bluegardenia on this forum recommended tea tree oil to me for that condition.   It has to be diluted about 15:1 (she used saline but I actually used rosewater made with purified water).   Anyway I think it's got rid of the blepharitis over a 3 months period (though I do still have dry eyes).

Thank you Araminta. I did come across that but I noticed that it is usually recommended for a certain type of Blepharitis (Demodex Blepharitis). I will have that as an option if things don't get better. The Opthalmologist I went to recommended the Refresh Optive (or) Purified Castor Oil if I wanted a home remedy.

Many doctors mistakenly think that Sjogren's affects only tear gland (and no other eye glands). In fact, Sjogren's affects tear glands and Meibomian (oil producing) glands, and causes global tear dysfunction/tear film abnormalities.

Have you had a lip biopsy? Up to 50% of people with Sjogren's may have no antibodies to Sjogrens. Most (but not all) of these patients they will have evidence of Sjogren's Disease in the salivary glands.

Have you seen a Rheumatologist at a university affiliated medical center/clinic? They are usually more knowledgeable about Sjogren's than many other Rheumatologists.

Thank you Jasper. This was my exact next step. I am planning to visit a University facility and check if they recommend a lip biopsy. I am very sure that I did not have any problems till a couple of months back. I don't know how long it takes for the lymphocytic infiltration to show up in a lip biopsy. Little wary of doing it early and then having to redo it again later.

You might ask your docs how common it is for someone your age to have Blepharitis. Seems unusual to me and I do know it was one of the first signs that something was amiss.

I did suggest multiple times to the Ophthalmologist that there could be an underlying cause for the blepharitis and we should atleast try a Sjo Test to look for new biomarkers. The Opthalmologist didn't take it very kindly. She asked me to continue the recommended measures to treat Blepharitis and follow up on the dry mouth with my PCP.

I'm surprised none of the ophthalmologists thought you might be a good candidate for Restasis, a prescription anti-inflammatory eye drop. Maybe ask about that if you go back. Optometrists can also prescribe Restasis.

Luckily there are OTC remedies that can help alleviate some of the SJS and related symptoms, and hopefully you are finding some of them to be helpful. If lid scrubs, heat application and lubricating eye drops are all you are doing for your eyes and they are still uncomfortable, it may be time for you add eye gel drops and eye gel to your bag of tricks. Also, I have found Country Life brand Vitamin A at 10,000 iu (highest daily FDA approved amount) is helping with eye moisture.  In addition, I switched to BioGanix Ultra Omega 3 fish oil (two with breakfast and two more in the early evening) and have found it to be noticeably more helpful than my old brand.

Try to stay positive about the relationship situation. I and many others have married despite having an autoimmune problem or other chronic conditions. It can be hard to date under the circumstances as some may run away when they hear of certain problems, but others will understand that nobody is perfect, accept you for who you are and what you have going on, and stick around.

Thank you Sunshine. My Ophthalmologist explicitly mentioned that she didn't think Restasis was as effective for Blepharitis.(I think her claim was from the point of view that this was an isolated case of blepharitis and no tear deficiency) She said that if the scrubs, compresses and artificial tears don't work..the next step would be to try Oral Antibiotics like Doxycycline.

Wow, how strange is it that three people have developed similar symptoms around the same time and sought out help from this forum at the same time? Makes me wonder if there is some kind of new allergen or product around that is triggering these sorts of reactions.

Ha ha, you may be right. I am sure lifestyle changes in the last 50 years have played a huge role in the increase of autoimmune illnesses. Also,  people having the ability to "research" their symptoms on forums like this mean that at any point, we are going to find someone who has similar symptoms/experiences.

[SunshineDaydream]

hopeforall, it would have been better for me to have specified that my ophthalmologist prescribes Restasis as part of my melbomian gland dysfunction treatment. I mentioned it because I saw you have that condition, too.

[hopeforall]

Thank you Sunshine. I will bring this up if the current procedures suggested by my Ophthalmologist don't work.

@All:
I managed to get referred to an Otolaryngologist tomorrow.
I am planning to tell him about the dry mouth, dry throat and dry eyes all starting simultaneously and ask him if he has any ideas/suggestions.
Given that the dryness is not extreme, I'm afraid he is going to dismiss my concerns just like my PCP, Ophthalmologists and Rheumatologists.

Are there any specific diagnostic tests/questions I can ask him to get additional clarity?

[Synnove]

hopeforall,
the otolaryngist (ENT) typically is the doctor who might do a lip biopsy, which I think is the gold standard diagnostic test for Sjogrens.

If, and when you go back to an ophthalmologist, you might ask for the test Shirmers test.  There is also a new diagnostic test called Lipoview test.  It is possible that only larger eye centers has this test available.  This test takes pictures of the meibomian glands and can diagnose meibomian gland dysfunction, and to what degree.

Good luck. 

[ccaplin]

I am sorry to hear you are having such trouble with your doctors. I had a similar issue with a Dr. back in 2008 when I got sick. I had what seemed to be the flu, but then broke out in a rash and had "ups and downs" with the flu symptoms. I went to a doctor and asked about Lyme disease (I live in an endemic area), but she said it couldn't be Lyme; however, she offered no other diagnosis. I was dissatisfied with this result, so I made an appointment to see another doctor. He thought I had something called erythema multiforme and referred me to a dermatologist. When I saw the derm, I again brought up the possibility of Lyme. After discussing my risk factors, the (very experienced) derm said, "I don't know that it isn't Lyme; we'll test for Lyme." Three guesses how that turned out...

My point of that long story is, a doctor who isn't willing to consider a certain diagnosis or test for it is doing what I call "psychic diagnosing." I think you should seek a second (or third, fourth, etc) opinion, until you find someone who will at least test for all possibilities. Just my two cents' worth.

As far as the supplements go, I don't think it can hurt to take supplements to help individual symptoms even without a diagnosis. I started using TheraTears Nutrition a few months ago, and I think it's been helping; although, I have been on Restasis for several years with success, so I don't know how I would feel about it if my eyes were as dry as they used to be!

[WhatYouSjo]

Hi hopeforall,

I feel like I've replied to a lot of these sorts of posts lately. Interestingly, my very first symptom was dry eye, which my optometrist also attributed to Blepharitis. Nonetheless, he prescribed Restasis, which helped immensely. That should have been an indication that something more was going on. As Sunshine mentioned, optometrists can prescribe Restasis as well as ophthalmologists, so you may want to try that angle.

When it comes to doctors, many of us have had to deal with dismissive attitudes. It is particularly bad when you are a relatively young man. "Young men don't get Sjogren's Syndrome," as my first rheumatologist said. More accurately, young men don't get diagnosed due to attitudes like that. I have to wonder if we young men are less likely to show positive blood markers, as many of us seem to lack any SS antibodies. Unfortunately, I haven't really seen research focusing on men with SS.

My main advice would be not to settle for a doctor that you don't feel is looking out for your best interests. There are definitely doctors who will focus on you and your health, treating your symptoms, rather than just checking some boxes on a virtual clipboard. Depending on location and health plan, it can be difficult to find new doctors, but you should always be willing to fire your doctor if they aren't looking out for your health (which, incidentally, is there job). I wrote a post recently with some thoughts on finding a good doctor/rheumatologist.

I'm not a proponent of salivary gland biopsies (neither is my rheumatologist), but if you do get one, make sure you have an experienced oral surgeon or ENT who has successfully carried out many, many biopsies. You really want to avoid infection or permanent nerve damage. The Sjo test is an option if your insurance will cover it, though my test didn't show any more markers than my previous blood tests did. Unfortunately, I doubt your team of doctors would take the 3 new markers very seriously even if they did come up positive.

[hopeforall]

If, and when you go back to an ophthalmologist, you might ask for the test Shirmers test.  There is also a new diagnostic test called Lipoview test.  It is possible that only larger eye centers has this test available.  This test takes pictures of the meibomian glands and can diagnose meibomian gland dysfunction, and to what degree.

Good luck.

Thank you Synnove. I would really like my Ophthalmologist to try these non invasive tests like Lipoview and Sjo test. But the Ophtalmologist is stubborn that those are not needed. I'll probably touch base again in a couple of weeks with them if things don't get better.

My point of that long story is, a doctor who isn't willing to consider a certain diagnosis or test for it is doing what I call "psychic diagnosing." I think you should seek a second (or third, fourth, etc) opinion, until you find someone who will at least test for all possibilities. Just my two cents' worth.

Thank you for sharing your experience ccaplin.

Hi hopeforall,

I feel like I've replied to a lot of these sorts of posts lately. Interestingly, my very first symptom was dry eye, which my optometrist also attributed to Blepharitis. Nonetheless, he prescribed Restasis, which helped immensely. That should have been an indication that something more was going on. As Sunshine mentioned, optometrists can prescribe Restasis as well as ophthalmologists, so you may want to try that angle.

Thank you Luke. I did ask for the Sjo test as you had mentioned. Looks like my Ophthalmologist is a little old fashioned and doesn't really think there has been sufficient research behind the Sjo test and is not willing to try it out. Guess i'll wait a few more weeks to see how things go before suggesting it again.

[hopeforall]

I met an ENT yesterday who carefully listened to al my symptoms.
He had a look at my Sinuses as well and found that there was evidence of a recurrence of sinus infection (I had endoscopic surgery to remove sinus polyps a few years back)
He has prescribed an antibiotic (Augmentin - 2 weeks ) and a tapered dose of Prednisone (anti inflammatory steroid/immunosuppresant - 1 week) followed by a  CT Scan 2 weeks from now.
He said he wants to achieve the dual purposes of treating the Sinus infection and seeing the effect the Prednisone has on the dry eye/dry mouth symptoms.
I was a little wary of starting on immunosuppresants since my sicca symptoms were manageable with OTCs but I guess he is looking at it more from a diagnostic perspective.

[alwaysimproving]

Very interesting.... Gives me hope that he did not immediately jump to sjogren's syndrome.