Author Topic: Well, I got my diagnosis...almost  (Read 1433 times)

ellenkerr

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Well, I got my diagnosis...almost
« on: May 01, 2013, 09:53:52 PM »
My lip biopsy was the only thing left for my Rheumy to make a dx.  I knew my labs were back so I sent him an e-mail to ask him if I

should  make an appointment, or if there were any other tests he wanted to run.  This was the note I got back,

"Work up and biopsy were not particularly consistent with active Sjogren's. Biopsy was consistent with chronic sialoadenitis, which

means inflammation of salivary glands. This could have been from infection, prior stones or other causes. The biopsy is nondiagnostic,

but may possibly be reflective of your long-standing symptoms. I think it is reasonable to consider you as possible Sjogren's at this

point. At this time, I would wait on the repeat abdominal CT. If persistently enlarged lymph nodes without improvement then I would

consider referral for excision of one of them at that time."

I've decided that my expectations of doctors is just unreasonable.  I understand that my lip biopsy didn't show my salivary glands

surrounded by hostile invader cells to have a focus score, but instead they just found dead scar tissue and atrophy, due to the hostile

invader cells finally killing the glands.   Since this is my new Rheumy...I've only seen him once in the intake process, you would think

they would want to tell their patients what Sjogrens is?  This doctor doesn't know me or if I know anything about sjs.  I would think

they would want to follow up with the patient to answer questions and provide a little education.

Maybe he figured I would get back to him after my CT scan for the enlarged nodes.  Who knows?  I know what to do for now and if I

have questions, I guess I'll just track him down.  So at least I have a diagnosis of "possible sjogrens".  I wonder if the symptoms

or treatment for "possible sjogrens" is the same as a dx of "sjogrens"?? ???

susanep

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Re: Well, I got my diagnosis...almost
« Reply #1 on: May 02, 2013, 03:58:07 AM »
I guess you would have to ask your doctor to know for sure, but I understand the frustration in wanting to know one way or the other. I hope you find out what he says soon.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

irish

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Re: Well, I got my diagnosis...almost
« Reply #2 on: May 02, 2013, 09:35:12 PM »
I can understand your frustration, but there are many times that docs don't like to nail someone with an autoimmune diagnosis a it can make life more difficult for our health insurance coverage and rates. Sometimes a "sicca" diagnosis is just fine a long as they treat the symptoms. Good luck and hang in there. Irish

ellenkerr

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Re: Well, I got my diagnosis...almost
« Reply #3 on: May 03, 2013, 11:00:42 AM »
Thanks Irish and Susan

I'm OK with the dx, however, when you put what the lab dx biopsy as "chronic sclerosing sialoadenitis" in the computer, you find that

this is classified as one of the IgG4 diseases and can go along with sclerosing pancreas which can be confirmed by a simple blood test.

I also saw articles that  also associated it with lymphoma.  One site stated "Chronic sclerosing sialadenitis is a common fibrosing

chronic inflammatory lesion of the submandibular gland, which is thought to be the result of sialolithiasis, and is not associated with a

systemic autoimmune disease. Salivary MALT lymphomas are typically associated with lymphoepithelial sialadenitis (LESA) in a patient

with or without Sjögren's syndrome."   I have not had any tests on my submanibular or parotid glands and no doctor has mentioned it,

although they may have done a quick visual check without saying anything.  I also saw somewhere that said that if the biopsy was

done in an earlier stage of the disease, it would probably been positive for Sjogrens.  Apparently there is a lot that the medical

community doesn't understand about these diseases, and expecting my doctors or myself to understand it would be asking a lot!

I guess I just would have expected my doctor to be interested enough to do a follow up blood test or maybe a look at my other

glands.  Maybe he is just waiting to see if the followup CT scan of my abdomen shows anything, and if it's lymphoma, we might know

something then. 

I'm no longer working and I was awarded SSD benefits and just recently became eligible for medicare health insurance.  My private LTD

insurance from Standard was also paying minus the offset of SDD.  In December Standard decided to reevaluate my disability and have

denied my claim stating that in their doctor's opinion, the neuropsych tests their doctor gave me showed I was trying to exaggerate my

condition.  That certainly wasn't the case, but I hear that big insurance companies do this all the time do deny benefits.  I appealed the

decision and they have had me jumping through hoops to get my doctors to send records, reports, letters, etc. and they will be

deciding by the end of the month if I get my benefits reinstated.  To be honest, I'm just exhausted and tired of dealing with Dr's and

insurance companies, and this is what they are counting on.

Well, I'm going to leave in a week with my daughter's family for a week on the beach in gulf shores.  I need to chill out and quit being

such a control freak.  I will just relax, soak up the sunshine, and forget about all this for a while.  I will follow up with a CT scan later 

and go from there.  I can't control if the insurance company will give me a fair and honest consideration, I can't control whatever is

going on in my body, but I can choose how I am going to feel about it.  I have chosen to be thankful for all that I have, and for my

wonderful family, for friends like you, and for every day I'm alive.  Thanks for letting me vent...I feel better now...thanks@


Carolina

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Re: Well, I got my diagnosis...almost
« Reply #4 on: May 03, 2013, 01:39:00 PM »
Oh, mizzy,

Doctors don't educated anyone about anything.  Their time is far too valuable.

Once a clear diagnosis is made (which isn't very often with Sjogren's) you might get some sort of general information in a pamphlet, possibly referred to an Association or a group like this.

The idea of a benevolent doctor sitting at your bedside, holding your hand and telling you everything's gonna be alright....nope, not happening.

We expect far too much of doctors I think.   They are swamped in information, afraid of making mistakes, paid for only one or two 'conditions' per office visit.

Read this article about what drives the costs in our healthcare system.

http://www.time.com/time/magazine/article/0,9171,2136864,00.html

There are arrogant and ignorant doctors, of course.  But by and large they are on a Merry-go-round, driven by enormous debt from a very long education, including Medical School.  And they are hounded through those little examining rooms by every member of their staff, to produce more output of patients and input of money.

I hope your vacation goes well.

I'm waiting, also, for a life changing diagnosis, on  May 29.

Most of my family is determined I won't have to DO anything, and I can't tell exactly from all the tests results that are in, what the diagnosis and treatment (if any) will be.

I don't know what to think at this point.

It's a hard place to be in, but I should be used to it by now!

Hugs

Elaine




« Last Edit: May 03, 2013, 04:24:45 PM by Carolina »
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ellenkerr

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Re: Well, I got my diagnosis...almost
« Reply #5 on: May 03, 2013, 04:35:46 PM »
Thanks Carolina and Litli Wiowa,

I sure hope you get good news Elaine...I will keep you both in my prayers.  The world has changed especially for the docs...I don't think our current medical situation s
hat they thought they signed  up for.  Does anyone remember  Marcus Welby, M.D?  I loved that show...they could diagnose and treat a patient in one 30 minute episode!   OK, my fantasy world has taken over for a little while...I may keep it for vacation :o. Its a little more fun than the real deal.