No diagnosis even as symptoms seem to get worse. Terrified and anxious

[LilliaT]

I feel like my situation is probably familiar to a lot of people.  I have bounced from doctor to doctor (including a couple of doctors that were recommended as knowledgeable about Sjogren's) and still have no diagnosis.  Obviously what I want, more than anything, is for someone to be able to tell me, definitively, that I don't have Sjogren's.  But if I do have it, I wish I could find out soon so that I can figure out what to do -- so that I can try to prevent further damage.

I am in my early 40s and have a 9 year old daughter.  I've always had dry-ish eyes, made worse by LASIK about 15 years ago.  I had recently been taking amitriptyline as a possible migraine preventive, but stopped the medication about 6 weeks ago because it caused dry mouth.  (I am on no other medications.)  But the dry mouth never went away -- and, as the weeks passed, got worse.  The dry eyes also seemed to get worse at the same time. 

My primary care doctor ran some blood tests for me.  Although I once had a blood test that showed a slightly positive ANA (1:80), the recent blood work was negative for all the autoimmune markers that she tested for -- ANA, SSA, SSB, Anti-neutrophilic Cytoplasmic Antibodies, Sedimentation Rate, Rheumatoid Factor, High Sensitivity CRP, etc.  But because my doctor could find no other explanation for the dry eyes and dry mouth (and because there were a couple of other issues that she thought could possibly be autoimmune-related), she sent me to a rheumatologist.

The rheumatologist said that the negative test results didn't rule out Sjogren's, but she thought I probably didn't have it because she'd expect to see some autoimmune markers given that I'd dry eyes for so long.  She referred me to an ENT, who said that I had silent reflux and that my thyroid seemed slightly swollen.  (I now am scheduled to go do an ultrasound for the thyroid next week.  I'm not sure what the next step re: the reflux is.) 

Both the rheumatologist and ENT suggested that I wait another month and -- if things don't improve -- that I consider a lip biopsy at that point.  I am nervous about waiting too long because the dry mouth seems to be getting worse day by day, and I keep imagining that I'll have no salivary gland function at all soon.  (At this point, the insides of my lips are extremely dry, but I can work up a little spit under my tongue with effort.) 

At the same time, I keep hoping that there's some other cause for the dryness and that it'll magically go away.  I've desperately looked for other possible causes of dry eyes and mouth -- allergies?  anxiety?  some vitamin deficiency?  iodine deficiency?  I've asked the doctors if they can think of other possible explanations, and they have none.  But they don't really seem to be leaning toward Sjogren's at this point.

I am terrified and anxious, to an embarrassing degree.  I've read the horror stories about really bad cases of Sjogren's (which seems to be all there are online).  I am afraid I'll become a burden to my daughter; that I'll no longer be an active and useful parent; that the rest of my life will just be drawn-out degeneration and pain.  I know it's ridiculous to worry like this when I don't even have a diagnosis yet.  I keep telling myself there's another explanation and that I'll be so happy and relieved once we figure it out.  But I just find myself in this spiral of fear and dread.

I'm sorry for such a long-winded post.  If anyone has any thoughts or advice, I would be really grateful. 

[Wal]

I totally understand your fear. My eye doc told me I had mild dry eye about two years ago but they didn't bother me. Almost 5 months ago I had a sudden onset of dry mouth, nose and eyes. It waxes and wanes every day. Some days are so mild I think I'm on the up. The next day it's bad. I get really dry behind my lips too. My tongue is raw and dry. I have do diagnosis. Negative blood markers. ENT did a saliva flow test which was a "little low but not sjogrens low". He said to come back in May or June for a lip biopsy if my symptoms didn't improve. Well, here I am. Still feeling the same and scared to get biopsy and it be negative leaving me with pain and no answers. I'm 36 with a 2 and 6 year old. I don't have time for this nonsense. I'm in desperate need of answers myself. I'm sorry you're struggling. I understand.

[SjoGirl]

I am sorry for you as I understand the fear and frustration.

First as member Joe would say "breathe." Anxiety can heighten all sorts of symptoms, I'm not saying that is the cause of your symptoms, just that it can make it worse. Until you can find docs who can help self care and self love will be helpful giving you a sense of control and hopefully a bit of relief.

Second, have you seen an opthalmalogist and had a Shirmer's test done? The test helped confirm that I have Sjogrens or a a connective tissue disease even though my lip biopsy was negative. The eye doctor I see specializes in dry eye and also told me that my issue was not just that I didn't produce tears, but that my tear film was damaged (there are different reasons for dry eye).

Tests are not always positive at first and some people never have positive tests. Also, AIs can take years to develop. I didn't have positive tests at first, but did later. Now that things are more under control my tests are better again.

Read as much as you can about Sjogren's, use a symptom tracker so that when you see a doctor you can provide that information. Use this group and good luck.

[LilliaT]

Wal, I feel like we are in kind of the same position.  It is frightening and depressing and isolating.  If I weren't a parent, I think maybe I wouldn't be quite as terrified -- because then I wouldn't be afraid of failing someone else.  I hope very, very much that you get answers and relief, and that this ends up being only a bump in the road for you.

SjoGirl, thank you so much for your very kind reply.  I do think the anxiety is making everything worse.  It's completely non-productive -- I know it isn't helping and won't change the outcome, and yet somehow I can't seem to stop it. 

I did see an ophthalmologist, but he did not do the Schirmer's test.  I didn't know about the test before I saw him and didn't think to ask him about it.  I made an appointment with a different ophthalmologist -- one who is known as an expert in dry eyes -- but that appointment isn't for a few weeks still. 

Could I ask how you are doing, generally speaking?  And what you have found to work for you so far?

[alwaysimproving]

I am also in the process of being diagnosed. I will say that my Rheumatologist stated that sjogren's is the most manageable of connective tissue disorders. Your worries of becoming of no use to your daughter are probably based upon the extreme stories you read online... Most cases are more mild, of sjogren's is what you even have.

[araminta]

Hi Lillia, I can't add much to what has already been said, other than to say I am in a similar position, though older than you and I don't have children (but do have elderly parent).   My GP and the rheumatologist I saw both thought I didn't have SS, however my last appointment was last September and the symptoms go on and on, including fatigue, so I am pretty sure I do have it.   As has already been said, the big thing is NOT TO PANIC!   It never ever helps and always makes things worse.   I am trying to exercise when I can, I'm taking some good vitamins, eating healthily, and I find mindfulness/meditation a big help in giving a bit of objectivity and perspective.   There are also lots of ways of treating individual symptoms as you will see if you do searches or look at people's signature statements.   And remember that medical research is always ongoing and more help may be available in the future.

[SjoGirl]

Lillia I don't want to discourage you, but will say that it's take about 5-7 years or me to really get to the root of my problems and find a treatment plan.

I had to do from doc to doc and fortunately have a PCP who has been helpful every step of the way. She's kept me patched together when needed and referred me to new docs when existing ones weren't working out or left town.

What has worked/helped:
1. I now have a solid team of professionals: PCP, rheumatologist (at an academic medial center), hematologist (at same place as rhuemy), neurologist, gastroenterologist, and eye doc (who specializes in dry eye).

2. Tried Plaquenil twice and failed, new rheumy said let's not try heavier duty drugs (like others I am very med sensitive). If I have a bad flare he gives me very low dose Medrol) (I can't take Predisone) and I just started Evoxac. Other than Tylenol and an occasional Tramadol if pain spikes I don't take anything else.

3. Diet changes -- no gluten (well I have a bite once in a while), very low sugar (I flare badly when I eat a lot of baked goods, figured that out last fall), no diary at least not milk (I can do mayo and a bit of butter). Lots of fruit, veggies, lean meat (yes, meat), etc.

4. Exercise, exercise exercise, which in my case is mostly walking. It works because I have 100% oxygen levels.

5. Reduced stress. I say no a lot more, rest more, pursue past times that are more quiet like reading, doing puzzles, etc. If/ when I travel I just have to go slower. I hate it because I've always moved quickly with everything, but it wears me out.

6. Reading everything I could about SjS and attending the SjS Foundation conference helped me early on.

I also have an extraordinarily supportive husband and circle of friends.

Hope this helps.

[katie1111]

There is a reason we are called patients because that is what we have to have.  Wait, wait wait  - ok, unless you are the patient.  You didn't say if you have tried any of the over the counter treatments - theratears, systane, etc for dry eyes, and biotene and the various lozenges and chewing gums for dry mouth.  At least you might be able to feel better while you are becoming a professional "waiter".

But remember, there are many of us who are living productive lives - with a few modifications, with this disease.  In fact, probably the majority.  It is a lousy disease, but a disease you can learn to live with live with.

Don't wait for the doctor, talk with your pharmacist and try some over-the-counter stuff.  Perhaps if you start to feel better, you will have an easier time waiting for a firm diagnosis.

By the way, I having been posting for several weeks, I have been traveling.  Have cane, bag full of medicine -will travel.

Katie1111

[LilliaT]

SjoGirl -- Thank you for taking the time to respond again, and for all the information.  I wish I had a really great PCP.  Mine is nice and perfectly competent and was fine all the years when I had nothing serious going on.  But she doesn't seem particularly interested in figuring things out or coordinating care generally, and so I feel a little like I'm flailing around blindly.  If it turns out that I do have Sjogren's, I can't wait to get to the point where I have a good plan in place.

I am in NYC, and I have been disappointed to find that we don't have a dedicated Sjogren's center, the way that some other cities do.

Katie1111 -- Thank you for your response.  I have been using a bunch of over-the-counter things for the dry eyes and mouth.  I've been using Systane eyedrops at night and Refresh during the day.  (I also started on Restasis a couple of weeks ago, but probably too soon to see any improvement.)  For dry mouth, I've been using the Biotene gel at night and have also just started using the Xylimelts too.  I have xylitol mints and lozenges that I've been using during the day. 

Right now, the dry mouth is the most uncomfortable thing, and I'm still trying to figure out how to handle it.  I am also really paranoid about what it'll do to my teeth.  (A good friend developed terrible dry mouth after repeated cancer treatments, and his beautiful teeth all ended up rotting away.)  So I've been obsessively reading about options and have bought a bunch of things to dry -- e.g., Carifree mouthwash -- and hope to talk to my dentist about maybe using MI Paste. 

My nose seems really dry these days too, and I have a weird sore feeling in my sinuses/throat  -- the way you feel when you're about to come down with something.  The ENT said I didn't have a sinus infection or anything, so I assume the discomfort is just related to the dryness (and maybe the reflux as well).

[Wal]

Lillian, my PCP is very nice and competent too, but she didn't seem too concerned about my dry mouth. I think most doctors consider it a minor annoyance at least that's what my ENT called it. That statement didn't sit well with me. One day of it yes, months or years  along with other symptoms certainly not. I feel this low lying level of depression at all times. Not sure if that's part of the illness or my feelings due to the illness and no answers/support. By the way, I've used Freshkote for my eyes and that has helped quite a bit. Eating small meals throughout the day helps keep saliva stimulated so I'm slowly switching to that.

[trejonina]

Hi, sometimes  ANA, SSA, SSB tests will be negative , and other times positive. In an older post in this forum someone wrote about this process and it's scientific name. This happened to me too with these tests, first time negative then positive, I told the rheumatologist to order them, he didn't want to... BUT I had done my research on the internet, after my ofthalmologist casually said "could you have the collagen disease?", but didn't order any tests. So I researched which tests to have. And with my Thyroid tests the TSH was 3.78 ,normal is 4, all doctors said normal , but I on my own started to take levothyroxine, until the endocrinologist took me seriously and felt the nodules, and then said doble the dose of levo.  The ultrasound showed  I even have a large nodule that needs biopsy, and have to do more tests for Hashimoto's which is AI. Four days before doing my thyroid tests I went  to the most expensive neurologist and told him about my extreme fatigue and disabling brain fog (which are neurological symptoms of hypothyroidism ) and he didn't order thyroid tests. Incredible!!! Next day a friend said she had these two plus other symptoms and it after tests it was her thyroid so then on my own iniciative I did my thyroid tests., after researching hypothyroidism on the internet. Point is with AI diseases neither tests or doctors are conclusive, watch and monitor your symptoms closely. Franckly my doctors suck!!!

[SJSman]

Hello,

Negative blood test results, and either a negative lip biopsy or else no lip biopsy, do not mean that you do not have Sjogren's.  You obviously have Sjogren's based on the terrible symptoms that you have.

Welcome to the Forum!

[Bigleyj]

Hi,

This forum really helped me a year and a half ago when I was first diagnosed. Strange that I felt some comfort in knowing it wasn't just me. All I can say is that I was in a real state, the fear and anxiety debilitating.  Ditto to everyone's advice to you.

For me once I started various medications and treatments I started getting better. Not the same but not as bad. It just took time to come to terms with it and to realise that I needed to choose what was important for me to do and what wasn't in terms of my energy and fatigue. Google the spoon theory.

I know it doesn't feel like it now but you can live a very fulfilling life. My suggestion at this stage is to deal with the dry mouth, ask your dr or dentist what you can do, and rest when you need to.  Be honest with your dr and don't dull down how you feel. Tell them how it is.

Post on the forum as younger to, we are here to help each other.

Jo.

[LilliaT]

Thank you so much for all the helpful responses.  I'm still bouncing from doctor to doctor, still without a diagnosis, but at least the paralyzing anxiety seems to have subsided slightly.  (It's now more of a constant dull hum of anxiety and worry, which is an improvement from the complete terror and dread I was feeling before.)  I am still clinging to the hope that it's not Sjogren's (even though there doesn't seem to be any other real explanation for the dry eyes and mouth).  But I'm also working on accepting that -- if it is Sjogren's -- it doesn't have to be the end of the world.

Updates since I last posted:
(1)  I got the results of my thyroid ultrasound (normal -- no nodules or anything).  Dr. Gold, the ENT who asked me to get the ultrasound, called me to ask if my symptoms have persisted.  When I said yes, he seemed surprised and said he would call me back next week to discuss next steps.

(2)  I saw a new ophthalmologist who specializes in dry eyes (Dr. Robert Latkany).  My eyes felt bone dry while I was waiting in the examining room, so I put eyedrops in right before he came in, which was dumb of me and probably threw things off.  He looked at my eyes and said it looked more like allergies than dryness.  He suggested Zaditor eyedrops for the allergies, and also suggested that I try Claritin or Zyrtec.  (I haven't done so because I worry they'll make the dryness worse.)  He did not do the Schirmer test. 

Dr. Latkany also kept saying my skin didn't look dry, and that usually people with Sjogren's have very dry skin.  (It was a morning appointment, and I had applied tons of moisturizer and lotion, so that didn't seem significant to me.)  I said, "Not that I want to have Sjogren's, but is it possible that people in the very early stages of Sjogren's wouldn't have extremely dry skin yet?" 

(3)  I had a follow-up appointment with my primary care doctor.  She said that Sjogren's is really rare, and she gave me that hoofprint/zebra analogy that doctors often use (suggesting that I was looking for a zebra when the answer was much more likely to be a horse).   She said it was much more likely that the dry mouth and dry eyes are caused by allergies.  She told me to use air purifiers and to keep our cat out of the bedroom, both of which I already do.

I mentioned to her that I have been very, very tired lately despite getting more sleep than usual; and that I feel generally kind of foggy.  I also mentioned that I seemed to be losing more hair than usual, that I am often short of breath, that my fingernails had become weak and soft, and that my eyelids and face are getting slightly puffy.  She said, "Those sound like thyroid issues, but your thyroid is fine, so that's not it."  I guess my blood work from October (not my most recent bloodwork) had included a TSH test, and that it was normal. 

Her theory was that I have silent reflux, and that it is causing me not to sleep well, and that is why I am so tired.  Her suggestions were just the same things I had already read (eliminate acidic foods, sleep with head/torso elevated, don't eat too close to bedtime.)  I didn't think to press her on what would be causing the other symptoms (hair loss, etc.).   
=========

  After the appointment with my primary care doctor yesterday, I actually got really sad and discouraged.  I would love so much for her to be right -- that it's not Sjogren's -- so I should have been happy.  But it was the first time where I just felt like I hadn't been heard at all.  (She also kept saying things like, "you're probably using a mouthwash with alcohol, which is drying out your mouth," as if anyone suffering from these issues would be foolish enough to do that.)  And it was the first time that I realized that maybe I'm going to be one of those people who has to wait years for a diagnosis.  I had thought that I could avoid that fate (of being in limbo for years) because I was going to specialists who have experience with Sjogren's.  But I feel like I'm still at square one.

[SjoGirl]

So sorry about what you are going through. Unfortunately I've been there done that.

One thing I have learned is to not take care of certain things before going to a doc if that might throw things off. No eye drops prior to an exa looking for dry eye, no lotion if my skin is dry, etc. Sounds silly, but if you are not presenting with symptoms while in the room they are on some level stuck because they need and seek evidence to diagnose. I'm not saying it's right, just saying that is how most docs operate.

FYI my rheumatologist told me on my last visit that my eyes were probably drier due to allergies and he has said my Sjs is under control. My spouse and I both say poppy cock, but this is my best doc so I need to just keep working things through with him.