Author Topic: 4.7 years to receive a diagnosis of Sjogren's  (Read 3090 times)


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Re: 4.7 years to receive a diagnosis of Sjogren's
« Reply #15 on: April 12, 2014, 12:39:32 PM »
It all began with HIPPA which has about as much to with our privacy as Bugs Bunny has to do with Leonardo Da Vinci.
Sidebar: and that part is getting worse. Lately the teaching hospital most of my docs are affiliated with is sharing patient contact info with "fundraisers" to cold call patients and request DONATIONS for the very medical center/hospital we're being treated at? That sure wasn't in my consent to treat.

I was so tempted to redirect teh caller to my congresswoman who can AFFORD to donate...but I behaved instead.

SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc


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Re: 4.7 years to receive a diagnosis of Sjogren's
« Reply #16 on: April 12, 2014, 01:27:11 PM »
Just staying on the topic of SJS.

I had never, ever heard of 'this', and I am sure many here and elsewhere had not.

Not everyone goes to the Dr.initially with Sicca symptoms (self included).
So I report X,Y,Z over the course of visits (months) ... then my eyes are gritty.
In my case however, X,Y and Z were interfering with work and taking care of my family.
Dr. is focused with getting me stabilized. So as I posted tests, tests and time. Mutual scratching of heads.

Still had never heard of Sjogrens and never thought to search things on the net. Friend, school nurse were volunteering theories.
I was immersed in life responsibilities, as we all are.

Not a lot of people really do search. And some get caught in pseudo-advertisement sites trying to find information. Internet "infomercials" that look and sound legit. So learning to find reputable site for some is another learning curve.
Most likely the generic symptoms checkers do send folks this way..eventually.

We are in reality about 1% or less of the US population, and in the SJS world maybe 20% may have systemic manifestations.. we are just not that common.

Pain--> Dr. is going to look at  typical causes.
Sicca ---> GP is going to ask about menopause, check for diabetes, etc. And if you go to an Endo, some of them specialize in diabetes, not necessarily Thyroid, etc. Then maybe Sjogrens after Ophto, etc.

Just looking at the original post of "Interstitial Cystitis".
Referral to Urologist? Is Sjogrens within their realm of expertise?
I really think that would be a long shot.
When I search "Interstitial Cystitis" it stated pts can also have fibromyalgia, chronic fatigue syndrome, chemical sensitivities, allergies, Sjogren's syndrome, Systemic lupus erythematosus, and anxiety disorder.     Some of which cause Dye eyes and mouth?

Who would determine a definitive 'symptom checker"?
I suspect that there are net symptoms checkers that if some of us used would come up off the path, or if it could would read " Does not compute"
The ones on the net all have disclaimers.. so a disclaimer from your Dr.?

If it were that simple I am sure it would have done.

Still waiting for Dr. McCoy from Star Trek.. that great handheld scanner he used. Sigh.


« Last Edit: April 12, 2014, 02:45:08 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"


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Re: 4.7 years to receive a diagnosis of Sjogren's
« Reply #17 on: April 12, 2014, 02:52:30 PM »
But Quiet, you have educated yourself!! You haven't been to med school, right? Look at the stuff you contribute daily to the board, all of the info you find. What ccc is talking about is a "specialized" medical program.

I am going by the original post and that's what's so dang frustrating (emphasis mine).

"""For YEARS I have been stating "yes" to dry eyes, dry mouth, difficulty swallowing, nasal congestion, joint aches, urinating frequently, pain above pubic bone, urinary urgency, numbness and tingling and burning in feet, and many other symptoms they ask about. I also describe many symptoms. They have BASICALLY BEEN IGNORED I HAVE NEVER HAD A PCP ASK ME ABOUT ANY OF THOSE 'YES' ANSWERES. THEY JUST  IGNORE THEM LIKE THEY DID NOT EXIST."""

Yet here we have the salt in the wound in the signature ***"ANA 1:160;" ***Had they not ignored those things she was saying. Just done some blood work, found the ANA, sent her to a rheumy... she's an in your face sjoggie with positive testing. She couldn't even get a PCP to listen, much less test!!!

Once you get to the rheumy, yes there are a plethora of dx's but that's why you take an extensive history and listen. Notmonly that, but we say it all of the time, the treatment is usually the same. We all begin with Palquenil. Right? My rheumy was able to say SjS by hearing that I had joint pain and fatigue since I was kid. Migraines and endometriosis as a teen/adult. Kidney stones early on. MTHFR caused miscarriages.  Knew I had inflammation despite neg testing why? He did a PHYSICAL exam (there's a novel thought!) which showed it. When he asked me how it felt, I told him and he believed me (another novel thought!l and said "That's carpel tunnel." or whatever.  The SFN and Autononomic Neuropathy were the same.

Treatment was suggested,  but no one followed through because no one believed either of us, until the tests showed it and they had already given me Cushing's and spent untold dollars doing it. They just did the same old thing. 10 min appt. Listen to nothing, look at labs, maybe send for another test, ignore everything I wrote down, bye bye. At least with a simple search engine not designed specifically for docs, it still suggests something other than fatigue and depression!!!

SjS is one of the most common AI diseases there are. Yes, drie eye, dry mouth... could be menopause,  age, thyroid.  Well, let's find out! Put A, B, C and D together and what seems most likely and begin there. Isn't that what we do here? That's what docs should do as well and it's not all that difficult to at least begin. Not when you take the person as a whole. It. Is. Their. Job.

Primary SjS, Steroid Induced Cushing's Syndrome, RA, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu, Citracal D & Pain Meds, Compazine, phenergan, Iberogast.


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Re: 4.7 years to receive a diagnosis of Sjogren's
« Reply #18 on: April 12, 2014, 03:15:05 PM »

I had never, ever heard of 'this', and I am sure many here and elsewhere had not.

Not everyone goes to the Dr.initially with Sicca symptoms (self included).

Still had never heard of Sjogrens and never thought to search things on the net.

Not a lot of people really do search.

I DID search-but for ONE symptom: the search was Excessive Dry Mouth.  Answer:  Diabetes / Sjogren's.  I've said this before....if you don't know what to search for, you can't get the answer.  You know?  I HAD the answer but didn't believe I had a DISEASE!

As for doctors, I was presenting a different symptom to each one of them. It was my GP's Physician's Assistant who answered my query "what causes excessive dry mouth?" by saying Sjogren's  I asked her if that were spelled s-j-o-g-r-e-n-s.  With relief she said, "Oh good.  You know what it is."  I told her all I knew about it was how to spell it.  Then I told her about the google searches.

I think I was so puzzled after it was dxed because looking back at the years of the various parts of my head being treated that not one specialist said, "do you also have________?"

I have been told I have a high pain tolerance threshold.  Duh!
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene


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Re: 4.7 years to receive a diagnosis of Sjogren's
« Reply #19 on: April 13, 2014, 07:21:18 PM »
My point exactly. It takes Google 5 seconds to present possible diagnosis, so why do doctors take 5 years....In classic cases with a long lasting SICCA there is NO other reason if Diabetes is rulled out...