12 Years of Problems...No DX

[xcitableone]

Hi everyone,

I'm so glad this forum exists. I found it through my research on Sjogrens. I'm 35 and a disabled veteran. I've declined in health ever since I got out of the military in 2005.

Thinking back, I've had symptoms of Sjogrens since childhood. I've had multiple bouts of conjunctivitis out of nowhere, most of them leading me to the ER. I've even had to have pockets of staph removed above my eye. After 2005, had a weird "panic attack" while driving going on vacation where my heart started racing, sweating, and lost feeling in my right arm like I couldn't lift it. It seriously felt like there was a disconnect in my motor skills. It happened again two days later after that first attack. Health started on a roller coaster after that.

Over the years, random, weird symptoms have popped up. Depression, extreme fatigue, lower back pain for no good reason, vitamin D deficiency, iron saturation issues, kidney disease, GERD, chronic fatigue, low testosterone, sluggish thyroid, and now an atrial fibrillation. My liver is also hurting me under my right rib cage. Thinning hair, dry eyes, fissured tongue. I truly feel like I'm falling apart!

I've tried explaining all of these things to my doctors over the years, and they typically come back and say I'm just anxious and depressed. I finally have a rheumatology appointment at the end of this month.

I've tested positive for ANA and SSB, but my labs show the ANA titer as negative. I know something autoimmune is going on with me. Do you all think it sounds like Sjogrens?

My primary put me on a month course of prednisone as a trial since I've had all of these issues going on. It made me feel like a new person! Now that I've tapered off, I'm back to being practically bed-ridden and sick.

I truly appreciate any and all feedback. Much love everyone!

[Joe S.]

The blood tests for me were inconclusive. I was Dxd on symptoms; Dry eyes, Nose, mouth, skin and A$$. It took about 7 years to get a DX for me.

[quietdynamics]

xcitableone wrote,I've tested positive for ANA and SSB, but my labs show the ANA titer as negative.
Was this a typo?

ANA pattern would provide Dr and patient with information as to possible disease. So it is not simply a matter of being 'positive'.

Hopefully your primary will refer you to a Rheum and you do not say if other issues are being treated by an Endocrinologist.
Symptoms overlay for Sjogrens and Lupus, commonly called "kissing cousins" as they can be so similar.

Laboratory Evaluation of Rheumatic Diseases  http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/laboratory-evaluation-rheumatic-diseases/

An Hematologist may be in order due to complexity of symptoms with major organs.

Testosterone therapy: Potential benefits and risks as you age  http://www.mayoclinic.org/healthy-lifestyle/sexual-health/in-depth/testosterone-therapy/art-20045728

Hope this info helps you.

[Deb 27]

I think it was smart of your doctor to try you on a course of prednisone. It sounds auto immune and your SSA and SSB are positive.  I don't know how often you get false positives but I'd say you have it. Sorry you are having to deal with this. Prednisone makes you feel great but you can't stay on high doses forever.  They might  put you on something like plaquenil long term. It takes a while to make you feel better, but it helps with pain and fatigue.

[SjoDry]

Hi X,

Welcome and thank you for your service. I have a son serving in Pakistan right now.

It does sound autoimmune. You should know that you can be seronegative and still have SS. Some docs will only treat if you test positive & others will treat the symptoms & not worry about the bloodwork. Many people, myself included, can take Plaquenil and a small dose of prednisone and be managed fairly well.

Sjogren's is different for everyone. Some have mild symptoms, while others are very involved. You tend to see the more involved patients on this site. Should you get diagnosed, you might be interested in getting The Sjogren's Book by Dr. Daniel Wallace. The book gives a comprehensive look at SS and how it affects each of the organ systems.

You will find lots of great info and support on this site.
Hope you will get some answers soon.
Take care.
SjoDry

[xcitableone]

Thanks everyone! I truly appreciate the feedback. I didn't show positive on my ANA titer but my SSB came back positive. My SSB has come back positive on four separate accounts over the past five years.

I do have a Rheum appointment coming up this month on the 27th. I'm worried as I feel they will just brush off everything as most of my other specialists have. What do you all recommend I come to the appointment with?

Prednisone did make me feel wonderful. I sure wish I could just continue taking it and feel the way I did!

I'll report back after I find out more at the end of this month and stay in touch. Again, I truly appreciate your feedback and look forward to speaking more!

Greg

[irish]

Have a list of the health issues you suffer with and tell how they impact your life. Play it cool and don't make remarks about no one listening to you as the doc will have to hear all your issues and examine you and then you will hear his opinion. The fact that you have symptoms along with a positive blood test should indicate something.

I started having symptoms in 1964 and got diagnosed in 2003 with Sjogrens and more as the years went on. Things started escalating in early 1990's but I just had to keep banging on doctors doors. I always looked too healthy I think but I sure didn't feel healthy.

Just explain how symptoms affect work, sleep, keeping house, etc. There are lots of things we put off or don't do at all as we get worse and it is such a slow progression that we hardly notice it til we make a concerted effort. Good luck. Irish

[quietdynamics]

Take your lab report in with you and check the report where the information for ANA result is located. Does it note the Titer/dilute result? If not I would get that information from Primary or lab.

Here is why: "Depending on the laboratory's reporting habits, a test that is positive at 1:10 or even 1:40 may be called either negative or weakly positive" https://www.hss.edu/professional-conditions_does-ana-negative-lupus-exist.asp

Also labs on kidneys, etc.

*My own DH just had problems with iron among other issues. So when you initially posted I found this infomation and shared with DH for him to have testosterone level checked. 
" Testosterone stimulates erythropoiesis via production of haematopoietic growth factors and possible improvement of iron bioavailability."
https://academic.oup.com/ndt/article/27/2/709/1923669/Testosterone-deficiency-is-a-cause-of-anaemia-and

I would call Rheum office and ask if there is a pre-appointment form they can mail to you to fill out. Since you have time, you could fill it out and mail back with labs. I think then everyone is on the same page as far as labs and the clinical examination hopefully can proceed more smoothly. Just a theory..   If you get the dilute you can just add that information in writing.

[Carolina]

Dear xciteable,

Here you will get amazing information and support.

My fabulous Immunologist says "we use the tests we have, not the tests we need'.

I was not finally diagnosed with my underlying immune problem until I was 70.  YES, 70.  All of my conditions from birth, are attributable to my Primary Immune Deficiency Disorder.  And yet, it wasn't diagnosed until I was 70.  Partially because it wasn't even identified as a condition with tests at the early part of my life, and partially because doctors didn't think to test for it.

So now I am treated with IVIG every four weeks, and no longer have illnesses.  BUT I still have an immune system that attacks my organs/systems, and for that there is only some treatment, but no cure of course.  I have no 'autoimmune conditions at all". 

We have cobbled together several treatments.  I have a condition like Sjogren's but not autoimmune, I have lung damage, bladder damage, ear damage, nerve damage both major nerves and small nerves in my skin.  My eyes and mouth are dry, I have moderate deafness, I have wheezing and sometimes asthma, I have Interstitial Cystitis in my bladder (bleeding and pain), and my legs are profoundly damaged with Peripheral Neuropathy and I walk only with braces and then badly, and my skin is a network of fire and pain, managed only with Gabapentin.

AND still I had almost no help until I was 70.  So, you are seeking, and you should find help.

I suggest that you seek out the nearest major teaching hospital (connected to a university Medical School), and ask for a complete work up. 

Regards,  Elaine

[xcitableone]

Hi everyone!

I apologize for not posting for quite some time to the amazing response of all of you.

I was finally officially diagnosed with Sjogren's after I visited with ophthalmology, then with ENT to do a lip biopsy. The lip biopsy results came back matching the profile for Sjogren's without any doubt.

I finally have an appointment with Rheumatology at my VA hospital to start discussing treatment options. I'm so nervous because my dx has taken over 12 years to happen, and I'm having all sorts of medical issues piling up. Now I know why.

I'll definitely be more active in here now that I'm past this major hurdle. Been feeling stressed/relieved/frustrated/depressed. I'm sure all of you can relate after getting the official dx.

Much love everyone, and thank you all!

[Kathy57]

Congratulations on your diagnosis!  What a relief!   12 years is too long to suffer but we have heard that story before.😡

I hope you get some good treatment and soon!😊

Kathy

[xcitableone]

Thank you so much Kathy! I'm just now starting to really dig in on my research about Sjogren's so I can help my medical team understand my symptoms better. They really are adding up since it has been over 12 years with no proper treatment. The atrial fibrillation and kidney issues are really bothering me. I'll definitely take a look on the forums here to see what others have gone through and see if that helps!

[irish]

Kidney issues are possible with sjogrens. There is also a condition called RTA that comes with Sjogrens and autoimmune disease affecting kidneys.

The atrial fib could also be caused by the Sjogrens. Over the years we have people on this site who have had heart irregularities that have been diagnosed as autoimmune in origin.  Neuropathy involving the electrical stimulation of heart rate is seemingly the cause. Some of the people had to haven defibrillators and pacemakers and often the ablation also. Good luck and keep us updated. Irish

[xcitableone]

Irish,

Thank you so much for your reply! I'll have to look into RTA - I've heard of it, but need to do more research. On my last kidney stone urinalysis, I had almost every type of sediment coming out of my urine. Also, my urine pH has been abnormally high for the past year, typically around 10. That's way too basic, have you heard of anyone having that issue?

Yeah, the afib has been puzzling. It has got to be the Sjogrens causing it. They can't find any other reasons why. I had an echo done, heart is fine. It has to be the electrical signals being messed up. I know it sure feels like my central nervous system is all out of whack. I sweat for no reason, and my skin always feels hot when my body temp is usually low.

So much to learn and really don't know how to approach the docs with these issues. I'll be using this site for a lot of information, so glad it's here with people like you!!