Hi, carpe-bean, although I am primarily a lung and heart patient, a High Resolution CT Scan recently revealed a lot of scarring in my lungs. I was diagnosed with Interstitial Lung Disease (ILD's). My Pulmonologist sent me to a specialist who deals with "rare and unusual I.L.D.'s and lung transplants." He diagnosed me in less than 15 minutes. He looked at the Hi Res CT Scan, asked me a few questions (dry eyes, check, dry mouth, check. Mom had the same but was undiagnosed), looked at my finger tips, which look and feel like little leprechauns have been using razor blades on them, painful and cracked. My diagnosis: Sjogren's Syndrome. (pronounced SHOW-grins). I started taking generic Cellcept, which is supposed to help reduce the inflammation in my system.

Our similar symptoms: vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun, difficulty concentrating and thinking, fatigue, deep pain in muscles, tingling and prickly, worse on left side of body, neck pain, extreme thirst. You may want to go here on the Mayo site and read more about Sjogren's, and see if that's what you might think you might have. I have bought Bausch + Lomb eye drops without preservatives, and still drink tons of water every day, now I know why I've been so thirsty for so long. I understand how frustrating it is to put trust in doctors.

I started going down hill in Sept, been on 40 mg Predisone/day, attempted tapering twice. My Pulm. had me get a regular CT Scan. I went to the appt, he sat there, crossed his arms and legs, and said, "I don't know what's wrong with you." Great. So just keep taking Prednisone until symptoms subside. Well, they never subsided, just got worse. If I climbed a flight of stairs, I was gasping for air like a fish out of water. I emailed my Pulm frequently, telling him how miserable I was. I'm a strong person and have been through a lot, but this "I don't know" business is for the birds. He should have sent me off for testing much sooner. OK, I'll stop my rant. Let us know what you think about Sjogren's. Try to stay strong! Suzi p.s. if you have any of your blood work results, perhaps online with your health care system, you could look for SSA and SSB Antibody counts. SSA and SSB are 2 indicators for Sjogren's. My SSA is negative, but my SSB is a weak positive, 33 units, 20 units being the high end. My ANA Screen is positive, and my ANA Titular ratio is 1:160. Hope this helps!

Hi,
I know it’s been a while since this post was made and I hope you have already found your answers by now.
Sorry for the rant here, this is often something I find myself debating with classmates (nursing student) and friends about.
I understand if no one actually reads this😅.

I myself have an ANA of 1:2560, and share a few of your symptoms.
With a list like that I think you may find you have multiple conditions(same as me), and this is why some doctors will dismiss certain symptoms as they are looking for conditions they happen to recognise more readily or a set of symptoms they believe line up with each other (this will differ between doctors and what they are use to seeing, and can even be influenced by the patient before you).
What you may also find is some of your symptoms will be caused by others, and thus seemingly dismissed by some doctors who aren’t treating them as separate and serious symptoms.
Things such as physical aches and pains are often a result of the body compensating, instead of all being separate issues.
In my case this is that the bridge of my left foot is collapsed and my ankle rolls inwards, this in turn caused my knee to hurt due to the change in weight distribution and my right leg to compensate, causing me right sided pain from my calf to my shoulder and even put my hips out of alignment (it took years to get to this point as I am a terrible patient who puts up with everything until it breaks me haha).

My personal list of symptoms is (the stared symptoms have been diagnosed):
Hot flushes (adrenaline rushes)
Iron deficiency (non diet related)
Abdominal pain, to which I can black out
Fatigue
*Vertigo
*Nausea
Intermittent loss of appetite
*Occasional tunnel vision due to dizzy spells
*Fingers and toes turn blue
Forgetfulness
*Light headed
*Livedo veins
Left sided chest pain
Oedema In ankles
Pins and needles in legs upon laying down
Raised red patches on calf’s and forearms after warm water contact
*Lack of blood flow to extremities
*Pins and needles if I sit down over 10mins
*Lower back pain (old injury)
*Pain between shoulder blades (old injury)
*Left knee pain
*Shoulder pains
Intermittent loss of strength in arms
*Calf pain (both sides)
*Ankle pain (both sides)
One sided temporal pain
As well as my ankles, toes, wrists, shoulders and hips all click as I move

Now while some of these have yet to be explained, I will often only speak to doctors of symptoms which happen in conjunction with each other, as many of these likely have nothing to do with each other.
Any symptoms that happen separately from all others are mentioned to every doctor as these could be related to anything or nothing.
I try to separate symptoms that happen more regularly as well, from the less frequent ones.

I have thus far been diagnosed with raynauds syndrome, scleroderma, silent migraines and a love of dangerous sports.
I have been checked for just about everything any of my doctors/specialists can think of, often what is found is my symptoms don’t line up with my test results and thus we start the cycle again or alternatively, I am called a liar and find a new doctor... it’s been 7yrs since this started and I am only 21.

My main point here is that, while you may feel like doctors aren’t understanding or taking you seriously, they are trying their best and it may just not be the doctor for you (even a bad doctor is just trying to help in their own way, though I do understand there are a few shitty doctors out there taking advantage of people, they are generally few and far between), or perhaps they simply want to rule out something more common before checking for the things you are asking about. Something any good doctor should explain to you before doing.
In my experience most don’t explain anything, which is terrible practise and Should be fixed immediately as it often leaves patients feeling as if nothing is being done to help them and doctors are just trying to steal their money.
I just wanted to put my two cents in, that in my personal point of view (And I don’t expect to be changing minds with this), a vast majority of doctors are simply trying to help, whether they seem like it or not, and is something to keep in mind when you may not understand why a doctor is doing something.
if you feel comfortable enough to do so, ask, and don’t be afraid to get pushy if they avoid the question, even the nurses at the front desk might be able to give you some insight into the purpose of certain tests.

Hello. I came across this discussion group and read this post and immediately connected to your story. I wish I could offer a word of wisdom, but unfortunately find myself in the same boat. My ANA titer was very similar. Mine was 1:2580, which is really close to your numbers. I have yet to get an appointment with a rheumatologist so I am in the dark, other than getting a copy of the ANA report and then trying to look to the internet to find some answers. I don't have a diagnosis. My GP suspects Sjogrens Syndrome, with the possibility of additional autoimmune disorders. I am on a six month waiting list to get in with a rheumatologist, so I'm looking at 6 mos to a year to even get in with a specialist. I'm not very good at sitting and waiting, so I look for my own answers until I find answers from a professional. However, hearing your story makes me very nervous that I may never find answers even IF I'm able to get into a specialist.

I am curious about which specific antibodies you tested high on. My report shows very high SSA-52, SSA-60 and SSB antibodies.

Hi. Your post is old I see but my fourteen year old daughter has the same ANA as you stated and that’s how I found your post. She has many of the same symptoms and doctors chalking it up to anxiety but she has yet to see rheumatologist gynecologist neurologist and cardiologist.. what did you find out for yourself? Have you found any gluten intolerance within yourself? The infectious disease dr said since she is negative for celiac then gluten probably isn’t an issue.. but she has been bleeding longer than 35 days and is anemic and I am awaiting yet more appointments.. thank you for your post.