Help with understanding

[Saln]

Hi. I'm new here, I want to be completely honest here and hope that someone can help me understand.

I have had issues with my health for a number of years, I currently have a diagnosis of hashimotos (autoimmune interactive thyroid) and recently vitamin D deficiency, low serum iron and positive blood results for ANA, DsDNA and SSA.

I have a lot of symptoms; fatigue, joint pain, breathlessness, TMJ pain (my joint feels like it pops out and I have to manipulate it back in), hypermobility (rheumatologist identified), raynauds, almost constant mouth ulcers, bleeding gums, dry lips, thick saliva, dry mouth, burning eye pain which makes my eyes feel very tired, is aggrevated by bright light and gives me headaches, dry skin, hair loss, almost constant flu-like feeling, confusion/short term memory problems, sudden weight-loss a year ago and inability to gain weight since. Mostly my symptoms disappear when pregnant.

A few years ago I got pretty desperate, doctors weren't taking me seriously and just kept telling me that I must be run down. I'd tried a lot of things that hadn't helped, adjusting my lifestyle, resting more, eating well, taking supplements. I stumbled upon articles about medicinal effects of marijuana and thought it would be worth a try. I stopped taking it because I still had symptoms (although the pain etc was a lot more under control) and wanted to try again to have some tests, I am concerned that again I'm going to struggle to get a diagnosis despite positive blood results because inflamatory markers etc don't appear to be showing. I'm unsure what effect marijuana could have now on my results. It's also something I don't really want to discuss with my doctor as where I now live it's not legal (except CBD). I appear to be getting more and more unwell quite quickly.

[Joe S.]

On average it takes about 7-12 years to get a diagnosis. Sero negative is when your blood work does not support the DX.

You can check some of our signatures to see what others are taking. CBD oil has helped lower my pain levels. It has been a gradual process to find what has worked for me. Like our diagnosis it is a process of elimination to see what works.

[SunshineDaydream]

Welcome to the forum, saln. Marijuana does not effect my test results for lupus or Sjogren's.

I'm surprised you haven't already been diagnosed based on your test results and symptoms. Maybe you could have your eyes tested for dryness (ophthalmologist) and mouth tested for salivary flow (dentist) and, if result show below normal, have results with letter sent to rheumatologist to at least get diagnosed with and treated for sicca syndrome.

[happylife]

Hi Saln

Positive Ssa and Ana, with joints pain, fatigue, dry eyes, dry mouth, dry skin is a classic sjogren case.

Get to good rheumatologist and you should get anti inflammatory and immunesuppressants. Your quality of life should improve significantly.

All the best.

[Saln]

Thank you for your answers I believe that they aren't taking me seriously because my inflamatory markers are low. They have said it's possible that I have sjogrens but have insisted I go for a scan of my salivary glands and to an eye specialist so they can check my corneas. They won't prescribe me any medication until this happens. They keep telling me it could be fibromyalgia despite the positive antibody results and symptoms and keep saying things that mouth ulcers could just mean I'm run down which is quite a reach considering I've had them pretty much consistently for 5 years. If nothing comes of these tests I will get a second opinion.

[whatnow]

Just sending you good vibes. I am also newly diagnosed, and not getting a systemic treatment even though I have not been able to work full time for 5 years. I have positive SSA/SSB, and was diagnosed with an ultrasound of my salivary glands (that 3 docs told me was TMJ), and I have a ton of gastro issues, vision issues, my mouth-gosh, it is awful!  My sed rate is very high, and my liver function tests are high, but nothing except some Exovac to help with my mouth (which doesn't help much). So I wish you the best in trying to get treatment. There seems to be no one in my state that is a specialist, and my rheumy doesn't seem to understand that I don't complain until things are B-A-D, so she isn't prescribing. I am not one to jump to meds either, but...well, there is a lot to what is happening with me but docs sometimes just don't get it. I know they don't want to jump into "big" therapies, but they don't understand that we have usually been living with this for years before they come into our lives. I think I am going to insist on something systemic on my next visit, even if only as a diagnostic tool. I feel your pain, and I hope you get some relief.

[cccourt1942]

SALN:  YOU HAVE SJS.  Your ANA and SSA positive tests support what I am saying.  Several of said this before my post.  Take those tests and your physician's suggestion you have fibromyalgia to any other doctor.  It matters not if your positive #s are "low".  SjS is SjS.  Just because a fetus is the size of a peanut at an early point in your pregnancy does not make it questionable how pregnant you are.  It only tells you about how long you have been pregnant.

REMEMBER: THERE IS NO TEST TO DIAGNOSE FIBROMYALGIA. It is 100& subjective test.  A physician, any physician can touch 18 points in 9 specific areas...and their judgment tells them (magically) you have fibromyalgia.  No one says what "strength" of pressure, no one knows if the person being examined is sensitive to touch or a bit stronger---hope you understand where I am going with this extremely casual diagnostic method. 

On the OTHER HAND: SjS requires an extensive blood panel and uses specific #s for comparing/diagnosing/specifying for diagnosis.  Compare those diagnostic "tools."  To call the fibromyalgia "point" system a "tool" is laughable.  In the decades since fibromyalgia became the disease de jour, NOTHING more specific has come about.  Drugs? Yes.  DXes?  Yes.  But with those statements, ask (either your friends or people on this board) how many have SjS AND Fibromyalgia---and which was dxed first?  I find Fibro first...and YEARS later the SjS.  While patients are messing with fibro meds, and rest, etc, so many have SjS and their salivary glands and lacrimal glands are on their way to atrophy---as mine are now.  I lived with the dx of fibro for about  a year. It was over 30 years ago.  I realized it could not be the answer to my particular problem...nor that of many others who I knew had other conditions.  I stepped away from being treated by a pain reliever which I could not take during the day as I worked all day...and couldn't "be under the influence."  The rest of the afternoon, evening was spent in la, la land.  No way to live.  Maybe that is why I took so many decades to say anything else about my symptoms.

Bottom line:  YOU have SjS.  YOU need a doctor who knows what to do with the tests you have in your possession.  The doctor you saw hasn't a clue as what to do for you except treat you for fibromyalgia.

Best of luck to you in finding your savior doc.  We've all been where you are at one time or another.  Hang in there.  We are here.
ccc