Author Topic: "We can't rule out Sjogren's"  (Read 4499 times)

Kendo

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"We can't rule out Sjogren's"
« on: May 17, 2010, 06:30:33 AM »
I had my first visit with a rheumatologist last week (after an 11 month wait - non-urgent case in Canada) and the news was mixed. He did a thorough exam and history and read the many pages from my family doc and says "We can't rule out Sjogren's".  He mentioned that since my SS antibodies were negative and my ANA of 1:160 speckled was neither here nor there, that the next step would be a lip biopsy. But I live in a small city and he said the last person he sent for a lip biopsy had the nerve affected and has a paralyzed lip! I'm an amateur flute player who is becoming unemployed soon through layoff and couldn't play the flute at all with a paralyzed lip.

But at least the report to various doctors will say we can't rule out Sjogren's - a big step for me. I started my journey to "diagnosis of mystery disease" almost two years ago with falling, poor vision, mental confusion and then life-threatening low blood calcium levels. So far, I've tested negative for Celiac disease (Mom is celiac) and yet had a "classic response to gluten withdrawal" and am eating gluten-free for 18 months. I've seen two different endocrinologists for the low calcium and might finally be getting treated as an atypical patient with autoimmune hypoparathyroidism. This disease is very rare and I've not found it to be related to Sjogren's at all. I went to our National Patient Conference in March and no one else had heard of it either. It might be a rare complication of celiac disease.

My GI visits have been numerous because I have fat malabsorption and am home today doing my 4th 72hr fecal fat collection. This is the most disgusting at-home test ever. But maybe I have pancreatic insufficiency - another notch on the belt for Sjogren's. I have a dry cough asthma and extremely dry skin and eyes and mouth becoming more dry each month.

I have a question for those who are farther along in the diagnostic process. Can you remember having strange non-sicca symptoms early on? I've done a lot of reading and the only disease that ties together all my various problems (including adult-onset celiac disease) is Sjogren's.  I guess I'll just have to keep hoping that leading a healthy lifestyle with good food and gentle exercise and reducing stress (job is stressful!) will help me in the long run.

I've learned so much from this website and a lot from the conference as well. It was great to find other people with water bottles and eye drops in their purses. All my friends think I'm pretty weird!
Kendo
Seronegative for Sjogren's, Celiac, MG; ANA pos, eat GF, calcium disorder, asthma, probable myasthenia gravis, low potassium, low stomach acid, fat malabsorption.
Mestinon, calcium, Vit D, 600 mg NAC, multi Vit, B50 complex, potassium, evening primrose oil, fish oil

DragonflyC

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Re: "We can't rule out Sjogren's"
« Reply #1 on: May 17, 2010, 07:11:34 AM »
Hi, Kendo.

Sorry to hear that you are still struggling to find a diagnosis.  Unfortunately, that's rather common with autoimmune conditions.

A lot of SJS patients are seronegative; they don't test positive for antibodies related to the disease.  I don't know the percentage, but someone else will likely come along soon and share it.

As for your lip biopsy, it doesn't sound like it's worth the risk for you.  Some people here have done fine with it, but some have not.

Could you ask your doctor to skip the biopsy, but still start treating you for SJS to see if it helps?  Plaquenil works for many AI diseases, and your positive ANA implies that's likely what you have.  It helps primarily with fatigue and aches and pains.  Evoxac or salagen might help you with your increasing dry mouth symptoms. 

Autoimmune hypothyroidism often accompanies SJS, so it wouldn't be unusual if you have both.

As for sicca symptoms coming later, that is definitely the case for many people.  For me, the arthritis came first, followed by dry eyes (a few years later), followed by increasing dry mouth. 

Best wishes.

Nans

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Re: "We can't rule out Sjogren's"
« Reply #2 on: May 17, 2010, 09:21:53 AM »
>>>Can you remember having strange non-sicca symptoms early on?<<<

I started with the joint pain and stiffness, anxiety, hair loss and intestinal issues at least a decade before the dryness became noticeable. 

mac

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Re: "We can't rule out Sjogren's"
« Reply #3 on: May 17, 2010, 10:23:36 AM »
HI Kendo,
Hope it's nice and warm up there in Canada!  Looks like you have a one in 4 chance of having a Stanley Cup win this year.  Sorry.  :-\

As for symptoms...looking back (since I was dx'd Dec 09), years ago dx'd with arthritis in hands, then hip, and back has had spur(s) for 30+ years.  Fatigue set in about '93 with it getting worse each year until I had to quit work 2 years ago.  That was accompanied by more joint pain.  About 6 years ago I began having episodes of swollen paratoid glands which would last from hours to a few days, come and go sporatically. 

The eyes have been itching and gritty all that time but always thought it was dirt blowing in them.  They also wouild 'burn' when going into WalMart.  Since our stores remodel every couple of years figured it was from off-gassing.  (I am very sensitive in new manufactured homes). 

Just a year ago had the first 'really dry mouth' during the night where I had to keep water next to the bed.  By fall the dry burning eyes came (and went) and I noticed I did not cry tears when very sad.  Finally had to go to doctor just after Thanksgiving as they burned so bad.  As someone described it, felt like peeling onions all day and Systane was not helping...went thru a bottle in two weeks. 

She did blood work along with the history (finally putting all complaints together) and I was fortunate???   ???  enough to have everything read positive, ANA, RF, IGA, IGG, all at least double the normal.  No need for lip biopsy.

Guess I am one of the more rare ones as most symptoms tend to come and go, except for the eyes, but am finally getting them under control.

Hope that helped.

YYC_ Mommy

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Re: "We can't rule out Sjogren's"
« Reply #4 on: May 17, 2010, 10:36:03 AM »
Hi Kendo, I am also in Canada! Calgary to be exact.  Welcome!

I would say that I had joint pain, fatigue LONG before I had the dry eyes and mouth. But I also did not think that they were a symptom of anything, I would think that my eyes were dry because of the dry air etc. It was not until my GP said that I have Sjogren's and it can cause all  sorts of problems including dry eyes and mouth, I then replied.......No wonder I have not been able to wear my contacts for sometime. I had never thought to bring that up. For me the dry eyes and mouth are manageable. The joint pain, the fatigue and the electrical shocks/pain (thought now to be neuropathy but awaiting further testing) with trouble walking are not manageable. Sjogren's effects everyone differently.

A few months back I saw an eye doctor who has a special interest in AI diseases and how they affect your eyes. She herself has celiac disease and she was telling me about delayed food allergies. She said that she had been tested and was allergic to many things and because it is a delayed food allergy the reaction can take a few days. She said that she found that testing more helpful than her celiac diagnosis. I wonder if maybe you are in fact allergic to gluten?

I know how frustrating it can be with the waiting.

I should add that I was via blood work and I have not have a lip biopsy.

kelene

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Re: "We can't rule out Sjogren's"
« Reply #5 on: May 18, 2010, 01:50:19 AM »
Hi there I am sending you a private message in regards to the lip biopsy...

Babs659

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Re: "We can't rule out Sjogren's"
« Reply #6 on: May 18, 2010, 04:56:40 AM »
Earliest non-sicca symptoms?

 I've had Hashi's for almost 40 years but
I didn't really get sick until early 2008, and I was dx in December of that years.  I've had a dry mouth for years, though, and I always had bloodshot eyes.  In 2004 I had a head CT scan because I had a swollen lymph node on my collarbone.  Turned out to be nothing, but the scans showed widely scattered mild adenopathy and "the parotid glands are of increased density bilaterally and diffusely consistent with chronic parotid sialadenitis".  My lungs showed scattered bullae.

In 2008 I started to have floating and greasy BM's and signs of malabsorption (celiac was negative).  My synthroid needed frequent adjustment.  I also had an increase in GERD and was dx with hiatal hernia and inflammation of the esophagus.  I had shortness of breath on exertion which the doctor said was reactive airway disease and he could not explain the appearance of my lungs (linear actelectasis and fibrosis).

After an ANA of 1:1280 I went to the rheumy who dx me.  After a year of tx most of my symptoms have improved, including the dizziness and muscle weakness.

kelene

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Re: "We can't rule out Sjogren's"
« Reply #7 on: May 18, 2010, 06:56:29 AM »
I can remember as a eleven yr old child having the joint on the top of my foot swell up like a lollipop... it was like that off and on for yrs... Joint pains random inconsistent traveling all over the place... along with weird randon skin rashes that would come and go... for years and years..

 You mentioned muscle weakness.. I have a serious issue with muscle weakness.. mine is in the shouldars the hips and front of my neck... I have had two needle muscle biopsies which apparently have a high false negative rate.. and they are talking about an open muscle biopsy.. All but one dr thinks that it is not a result of the SJogrens...

But after my second lip biopsy which I put off for yrs.. and I got an official dx of sjogrens.. they are willing to treat me much more aggressively and searching for an answer to my weakness is now only an option... they would prefer I have it... my point here is that having an official dx is very helpful.. for the mind and the body and it opens up your treatment options and gives you some sense of relief knowing something is really wrong.. I realize that a numb lip could be a career  stopper... I believe the ENT told me there is only a 10 % chance of nerve demage.. which is really same if you think about it..

I am seronegative .. according to my blood work I am a healthly person... 30% are seronegative..

good luck...

Kendo

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Re: "We can't rule out Sjogren's"
« Reply #8 on: May 22, 2010, 10:39:11 AM »
Thanks everyone for your input! I am even more sure after reading your posts that Sjogren's is my answer. I was diagnosed with fibromyalgia 25 years ago but was never as sick as others I met. I had reflux and stomach pain starting before all the rest of the symptoms. And the fatigue is just starting. Two years ago I was working full-time, moving my parents to town and volunteering for a play and was out 14 nights straight. Now, I can barely manage being out twice a week and getting through the newspaper or a book before nodding off is a treat.

Maybe I'll turn out to be positive for various tests and need treatment in the future. I expect the 5-10 years for a diagnosis will be shorter because I've started with a potential diagnosis sooner than most. But the traditional medical community is still hopeless as far as diagnosing my low calcium condition. Has anyone seen a naturopath for Sjogren's? Is there anything they can offer that all the other docs can't? Four endocrinologists have weighed in on my case and getting treatment in the US would take over 2 years to get covered by our insurance plan. Several docs have said they could write a case study report about me if only they could pinpoint what is wrong with me!
Thanks again
Kendo
Seronegative for Sjogren's, Celiac, MG; ANA pos, eat GF, calcium disorder, asthma, probable myasthenia gravis, low potassium, low stomach acid, fat malabsorption.
Mestinon, calcium, Vit D, 600 mg NAC, multi Vit, B50 complex, potassium, evening primrose oil, fish oil

Joy Cox

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Re: "We can't rule out Sjogren's"
« Reply #9 on: May 22, 2010, 11:18:21 AM »
Hi Kendo, Read your original post on this thread and you mentioned parathyroid glands.  More than likely with four Endos, you are aware these usually 4 glands control the calcium level in your body.

Took a length of time for tumor on parathyroid gland to show up. In fact, only after nearly a year of being with a Endo at Duke University Medical Ctr. in Durham, NC. One of top 10 hospitals in US did lady endo and I finally decide to run a Sestamibi (sp) Scan on the upper part of body.  And, the tumor lite up on the upper right parathyroid gland.

My question for you, do you take any HCTZ high blood pressure medicine?

My CA ran at high end, but within normal range for several yrs, now 67, and you are how old now?   No doc I asked ever gave me an answer as to why????

If you are interested in this post, I'll be glad to answer your questions, if you will please PM me.   Joy in TN

eyeamdry

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Re: "We can't rule out Sjogren's"
« Reply #10 on: May 22, 2010, 09:26:17 PM »
I'm surprised your doctor "knew" and told you "about the lip biopsy."  A bunch of us on here have been saying the same thing because it happened to us.  Many will say "be sure you get a good doctor."  Well, obviously no one is going to pick out a dumb doctor or one they think is incompetent.  It's not necessarity up to the doctor whether you get a good result or not.  Doctors do not have foresight into how we will heal and react to the surgery. If my job depended on me having "good lips", I'd skip the lip biopsy.   Lucy