Author Topic: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"  (Read 3327 times)

eboss2013

  • Guest
"SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« on: July 29, 2013, 08:00:30 AM »
So I finally went to see a Rheumatologist for the first time since being diagnosed 5 years ago or so.  Dry eyes and mouth have always been an issue for me, however the last 4 months or so I've had serious fatigue problems and I really wanted some guidance. 

I found a Rheumatologist in the area who I met with this past Friday.  He looked over my records, asked me a series of extensive questions, took some blood, etc.  Overall I thought his exam was very thurough. 

After all of this he began to tell me his thoughts.  He was not 100% sure that SJS is what I have.  I tested positive for the markers through my blood/urine years ago, the symptoms all fit - but because I am 27 and a male, with no known family history - he wasn't completely convinced it was Sjorgren's. 

He said because of my symptoms, he felt confident that it was some type of auto-immune disease and was comfortable with me starting Plaquenil.  He said an option to better guarantee my diagnosis was a biopsy (of I believe my salivary glands?) and that we could discuss that in a few months. 

My issue is this: I have been reading up on Sjogren's since I was "diagnosed" in 2007.  The symptoms fit. I've read a lot of your testimonies on here and I can relate to many of them.  I am 90% sure that I have SJS.   The fact that he seemed to not believe me did irritate me a little, I admit- however I let it go because I know he is doing his job and SJS can be difficult to guarantee. 

Here is my REAL issue: He said once we confirm the diagnosis that it was all a matter of treating the symptoms, however he said that at his last medical conference, Sjogren's was described by doctors as "nothing more than dry eyes, dry mouth and muscle pain."  I think he used the "medical conference" as a way of not directly saying this himself.  That line really bothered me.  In one line he COMPLETELY trivialized what me and many other people are struggling with. 

Anyone who has read my previous posts knows I HATE going to doctors, I HATE taking medications.  I would not have made this appointment unless I was desparate - which I am.  I wanted help, I wanted guidance..not to have my condition made out to be some kind of insignificant joke.  When he said that I felt like a little kid complaining of the sniffles. 

I just wanted to know everyones thoughts..has your doctor trivialized your condition like this before? Have you heard that line before? 

I will say this - Other than those comments I did like this doctor.  He was intelligent and thurough and I would nto mind working with him as long as he takes my case a little more seriously. 

Velcro

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #1 on: July 29, 2013, 08:07:25 AM »
So sorry you were made to feel that way eboss.  In answer to your question, yes, mine was trivialized so much that when I threw the Sjogrens antibodies during a search for Lupus, my PCP didn't even think it was worthy of telling me.  I just found it 2 months ago when I ordered all my medical records from their office after my new Rheumy thought that might be what I had.

long time dry

  • Full Member
  • ***
  • Posts: 144
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #2 on: July 29, 2013, 11:02:59 AM »
How frustrating for you.  I sympathize and hope you can work with this rheumy since you basically like him.  Sounds like he needs more information on SYS though.

I haven't had your experience but I have had similar ones that caused me not to even mention my symptoms any more, which thankfully were mild for a long time.  When I began having dry eye problems my then ophthalmologist said that I only needed a different type of contact lens.  Of course that didn't help and I had to give up wearing contacts.  Being a woman, I knew that reporting the "roving joint pains" would likely be trivialized and I might be classified as overreacting to nothing important.  My diagnosis has been such a help in explaining why I have all the symptoms (many now) that I have and being taken seriously.  Still, not all of my doctors really "get it" even though they do seem to try.

SjoAmy

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #3 on: July 29, 2013, 11:25:05 AM »
I agree with you Eboss. 

I also believe it is up to us, as patients, to tell the doc -- even though it may be awkward as an interaction -- "Excuse me, but I don't like it that you just trivialized my diagnosis."

I've lost docs standing up for myself, I admit.  But most docs have a sense about it.

I had to stand up to my eye doc a visit or two ago.  He had off, his brother --they're in practice together -- covered for him.  His brother treated me very nice....first time I saw him.  He looked at my chart, pressure readings, recent Plaquenil bout, beginning and end of Cellcept, continued rounds of steroids when needed, looked at my eyes and said "Amy I know my brother may disagree when he comes back but I would rather be safe, get you tested, have it come back negative rather than not do nothing at all.  Glaucoma is a silent disease. Would you get tested for me?". I agreed and liked his style.  His brother came back, to put my temp plugs in, was PEEVED OFF as he looked at the computer....and I stuck up for myself and his brother.  Then he said "you have lupus?". I said "no. I have Sjogren's and if you consider a RF of 11 high enough to diagnose RA, then I have RA.  But I don't have lupus.". "Why not?". "I don't have the antibodies. I have SSA, RF,ANA, all positive.". He looked at me and said " You know they can evolve." Trying to mitigate my diagnosis in front of me and a medical student and a nurse.  As I left that day, I requested to see his brother from that point on.

ktfabian

  • Hero Member
  • *****
  • Posts: 881
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #4 on: July 29, 2013, 02:56:14 PM »
Hi Eboss,

I'm so sorry you had this experience. I'd like to know what "medical conference" this doctor went to.

I see one of the nation's leading specialists in Sjogren's in Philadelphia. At my visit last week, he told me that they're now including something like 20 minutes on the topic of Sjogren's in medical school. It might have been a bit more, but not much.

I'm not a member right now because of finances, but I know the Sjogren's Foundation has quite a bit of literature they've put together to be handed out to doctor's offices through the Sjogren's Ambassadors (volunteer) program. Perhaps you could request some information from them to take to your next visit. Explain to him that you were somewhat put off by the definition of Sjogren's he had provided and wanted to provide some information for  him to consider.

I spent several years looking for a doctor who understood how to treat Sjogren's. I had several in my area (Northeastern PA) say they could treat it, but by the time I saw my specialist in Phila., he told me he was actually quite angry at how far they had let my health deteriorate with all of their "knowledge".

If you like this doctor and the treatment he's offering so far, it might be worth seeing if he's open to learning more about this disease than what he learned at that medical conferece.

I wish you the best,
Tracy

________________________________________________
55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

SjoAmy

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #5 on: July 29, 2013, 03:08:47 PM »
Hi Eboss,



I'm not a member right now because of finances, but I know the Sjogren's Foundation has quite a bit of literature they've put together to be handed out to doctor's offices through the Sjogren's Ambassadors (volunteer) program. Perhaps you could request some information from them to take to your next visit. Explain to him that you were somewhat put off by the definition of Sjogren's he had provided and wanted to provide some information for  him to consider.


If you like this doctor and the treatment he's offering so far, it might be worth seeing if he's open to learning more about this disease than what he learned at that medical conferece.

I wish you the best,
Tracy




I agree on all points Tracy.  I emailed Kathy Ivory @ Sjogren's Syndrome Foundation, and told her I wanted to volunteer, but like you, I didn't have the money for the membership.  She gave me an honorary membership for this year, and I am an Awareness Ambassador and am going to those same offices that "didn't treat me right" with information on Sjogren's Syndrome and many offices are thankful for the info......gave to my old rheumy & my new GYN. Vaginal dryness stinks.

I urge you to call or email Kathy Ivory @SSF.

Education is where the answer lies.

Carolina

  • Hero Member
  • *****
  • Posts: 5791
  • —if it ain't one thing, it's another." Roseanne R.
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #6 on: July 29, 2013, 03:43:04 PM »
Hi eboss,

I think the doctor may have been musing 'out loud' about the fact that there is such a wide range of 'views' about Sjogren's Syndrome, even among Rheumatologists.

He knows that his decision to support you, and to administer Plaquenil, would be questioned by his colleagues, and possibly by your insurance company as well!

And I've heard that Sjogren's is "nothing more than dry eyes, dry mouth and muscle pain" (not even adding muscle pain) from many doctors.  They don't know what they're talking about, and I send/take them professional journal reprints and NIH research data.  But I don't go back to them if they are Rheumatologists!  I have had a Rheumatologist who didn't know what Interstitial Cystitis is, and up to 50% of Sjogren's sufferers develop IC according to some studies.

Pay attention to what he DOES, first of all.

All that said, I have always been 'content' in my misery (many conditions, gobs of aches, pains, etc) and never sought any of what I think of as the 'heavy hitters' (Prednisone, Plaquenil, or chemo) to deal with my Sicca (which is Sjogren's with no confirming blood work).

Because I have severe osteoarthritis, and Peripheral Neuropathy, and anemia, and Interstitial Cystitis, and Meniere's, I have always assumed that the combination is giving me my problems, and that as long as could 'deal with them' without the heavy hitters, I would.

Now, come to fine out, my immune system is actually DEFICIENT.  I have a form of immunodeficiency called CVID and 20-25% of people with CVID develop autoimmune conditions.

Many of them are here on our forum.  And one of them does both the heavy hitters for Sjogren's AND the immune replacement therapy for her autoimmune condition! 

If you think the doctor is basically 'on your side' next time you see him, ask him about his comment.  Write down your own questions and issues, and throw that in if there's time at the end.   

"Doctor, last visit you said that some doctors think that Sjogren's is "nothing more than dry eyes, dry mouth and muscle pain".  I've done lots of research in the last 6 years, and Sjogren's appears to be more than that."  What do YOU think?

It's worth a shot.  The thing is, the important thing, is making sure that  you are getting what you need to deal with your symptoms.

You are young, and male, both of which mean that you don't 'fit the profile' but at least you  have confirmation of your condition!

Here is what NIH, THE National Institute of Health has to say:

http://www.ninds.nih.gov/disorders/sjogrens/sjogrens.htm


What is Sjögren's Syndrome?
Sjögren's syndrome is an autoimmune disorder in which immune cells attack and destroy the glands that produce tears and saliva. Sjögren's syndrome is also associated with rheumatic disorders such as rheumatoid arthritis. The hallmark symptoms of the disorder are dry mouth and dry eyes. In addition, Sjogren's syndrome may cause skin, nose, and vaginal dryness, and may affect other organs of the body including the kidneys, blood vessels, lungs, liver, pancreas, and brain.

What is the prognosis?

Sjögren's syndrome can damage vital organs of the body with symptoms that may remain stable, worsen, or go into remission. Some people may experience only the mild symptoms of dry eyes and mouth, while others go through cycles of good health followed by severe disease. Many patients are able to treat problems symptomatically. Others are forced to cope with blurred vision, constant eye discomfort, recurrent mouth infections, swollen parotid glands, hoarseness, and difficulty in swallowing and eating. Debilitating fatigue and joint pain can seriously impair quality of life.


That ought to get his attention!

Keep us posted, and keep taking care of yourself!

Hugs

Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-

slccom

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #7 on: July 29, 2013, 04:53:31 PM »
The eye doctor is quite right that autoimmune diseases can "evolve." The symptoms can evolve, and diagnostic criteria evolve.  I'm not quite clear what you found so offensive.

Sharon

Styx

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #8 on: July 29, 2013, 07:00:14 PM »
Hit that new rheumy button, and run! :D

Styx

SjoAmy

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #9 on: July 29, 2013, 07:51:42 PM »
He wouldn't acknowledge Sjogren's in the same way he acknowledged Lupus. 

Treat me for what I HAVE.......not what I could have in the future!

Yes AI can evolve....but I only have SSA and ANA, both positive.

From page 29 of the Immune System Recovery Plan (Dr. Susan Blum of Mount Sinai School of Medicine in NYC)

"  Tests to Request from your Doctor or Health Care Professional

     --  Antinuclear Antibodies
     --  Anti Phospholipid Antibodies
     --  Antibodies to double stranded DNA
     --  Anti Smith Antibodies  (Sm)

        The ANA test is the first screening test for Lupus.  (mine= +)
         
         As I have explained, a positive ANA test doesn't mean you have Lupus

           unless you have one of the three other tests is positive as well."

I AM NEGATIVE FOR THE 3 OTHER TESTS!

SO ACKNOWLEDGE THAT I HAVE SJOGREN'S NOT LUPUS.

No doctor should ever wish for their patients AI disease to evolve, just to fit in a box better!!!

SjoAmy

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #10 on: July 29, 2013, 08:17:51 PM »
A follow up on what that same book says about Sjogren's Syndrome on page 31:

Tests to Request from Your Healthcare Professional

    --  ANA
    --  SSA
    --  SSB

Elevated levels of anti SSA or anti SSB are diagnostic for Sjogren's







Seems pretty cut & dry to me.

Dee

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #11 on: July 30, 2013, 12:46:37 PM »
Well it certainly is so much more than that, as evidenced by this forum. 

I am not sure where your doctor was coming from with that statement, however I agree, he seemingly trivialized the disease and its symptoms and left a slew of them out and they can be debilitating.  I don't want someone who trivializes my disease to be administering my treatment when my symptoms are debilitating (or at all for that matter).

You could see this doctor again and have a frank conversation with him to clarify his position and in the meantime research doctors in your area to see if there is one more versed and knowledgeable about the disease and more comfortable treating it.  It could be that he felt that the disease wasn't given the weight it deserved at the medical conference, who knows.  I have hard time believing the bottom line at a recent med con being Sjogren's is only dry eyes, dry mouth and muscle pain. Again, who knows.

Recently I went inside my HMO group to see a rheumy (I pay cash to a rheum consultant and my docs for the most part abide by her treatment suggestions). He was a nice man, he was an empathetic man, he was a smart man, but he could not go beyond Plaquenil, he was not comfortable, and admitted he didn't understand how to treat my situation.  He suggested a big teaching hospital was my best bet. I stopped seeing him and RAN back to my Rhuemy consultant with cash in hand.  Not that I am against Plaquenil (been there done that) or want to take meds (I am quite obstinate about it) or against a big teaching hospital per se, but I didn't want to be treated by someone not comfortable treating my situation.

I have not recently been to a "medical conference," I am just someone who has been living with this sh!te for many years.

Hope you are doing better and no longer feeling desperate regarding your health and treatment options.  I know that feeling well, it sucks.

Good luck, keep us posted.

Take good care,
Dee

Suslew

  • Guest
Re: "SJS is nothing by Dry Eyes, Mouth and Muscle Pain"
« Reply #12 on: July 30, 2013, 10:45:28 PM »
Just the title of this post makes me angry  ;D.  When I was feeling so very low, I was told I had a mild case of sjogrens and was not offered anything, no help, no meds, nothing!  I was heartbroken and feeling like dog doo and then decided to go see someone familiar with Sjogrens.  Several month later, I found my doc and she's wonderful!

It really takes someone who is comfortable and familiar with Sjogrens to help us through this crazy maze of a disease.  It's more than just treating the individual symptoms, it's having someone who understands.