Hi everyone,
I won't go into the whole story because it is so upsetting, but I recently went for an opinion about whether I might have Sjogrens. I had many new symptoms in the past year while living with another chronic illness and an SSB auto antibody test came back mildly positive.
This doctor that I went to, supposedly a Sjogren's specialist, said that Primary Sjogren's is mainly SICCA symptoms and that any other symptoms are extremely extremely rare..... He ran new tests because he said my SSB test was only mildly positive.
I noticed in the new tests that this was not repeated and I found out that if the ANA is negative, this particular place does not test further. This makes no sense given I have read here that many people have negative ANAs but positive SSB or SSA autoantibodies.
He was extremely dismissive about Sjogren's possibly being the cause for the other problems I have - poly neuropathy, autonomic neuropathy, interstital cystitis and recently pericarditis / pleuritis (inflammation of the heart and lungs).
I really felt almost under attack the entire appointment. I tried to just go with it and not get into it with this doctor because I have learned from past experiences, it is a waste of time.
But now I am wondering if I should even go back for the follow up appointment. I don't have the energy to argue with this doctor or tell him what I have read. He is very set in his beliefs and there is no changing them!
So what do you all think... Do you think that if the ANA testing is negative, then there is no need to do the SSA and SSB tests?? Do you think neurological /systemic problems are EXTREMELY rare with PRIMARY Sjogren's??. He said the systemic problems - meaning the lung and heart inflammation ONLY occur with secondary Sjogrens, not primary....
I am a bit confused about what to do. I don't feel comfortable saying where I went, but lets just say that it is supposedly a famous place..... It was not only what he said, but the way I felt I was treated. I just have gone through so much that I won't see doctors who appear to have an attitude which isn't even about me. I don't have the energy anymore and I don't want to pay for a doctor to talk down to me when I am an intelligent person.
Thanks for your input....
Leah
Dear Leah,
I think you answered your question already. ;) This "expert" is dismissive, arrogant, and he isn't someone you can have a comfortable rapport with. You need to find another doctor who is able to work in partnership with you... not someone looking down at you from his "high horse". ;).
I can tell you that my ANA has always tested negative, and conversely my SSA has always tested positive. I have neurological signs and symptoms, and I was diagnosed with Primary Sjogren's.
I know you'll hear from many others on the board. I can't wait to read their responses. ;D
Hi Lisabeth,
Well, that just burns me up, I am so sorry you have been treated that way.
I have also had a negative ANA, snd it has been tested 4 times. Only one of my ssa ior ssb was positive and my rheumy said that could also be a lab mistake and they both might actually be negative. He diagnosed me on symptoms alone for primary sjogrens.
I was also under the impression that symptoms in primary are worse than secondary. Have you seen an eye doctor? My eye doc. Was the one who insisted i push for a diagnosis and start some treatment.
You need another opinion. I am again so sorry you have to go through being treated so poorly.
Thanks to both of you.
I was very disappointed that he did not even retest the SSB which is why I went there in the first place. Have you ever heard of this philosophy that if the ANA is negative, it isn't necessary to go on and test SSB and SSA ? Like I said, it makes no sense-there are lots of people with a negative ANA and positive SSA or SSB. I have read this in multiple places.
I will NOT keep seeing this doctor, but I am right now debating whether to even keep the follow up appointment for results this week. If I can keep my mouth shut, and not react and just listen to what the genius says, then I am at least done there. I don't have to take the recommendations, nor will I.
Yes, this person said that symptoms OTHER than dry eyes and dry mouth are very very very (note the 3 very's) RARE with primary Sjogrens....
And yes I have been to an eye doctor and I had that test a few years ago and it was abnormal. During this visit it was fine. I do have dry mouth more than dry eyes, but these two things do not bother me as much as some other problems.
I sometimes just stop caring because dealing with doctors can sometimes be awful. It should NOT be this way. Why the H did these people go into medicine? They HURT people with their attitudes and that is just immoral to me.
There is no need to be nasty ever to a patient who is very calm and just asking a few normal questions. When I asked about neuro Sjogrens, I just about got my head blown off. All I did was say that I had read about it.... The doctor flipped his lid! I have no idea why.
Leah
Hi Leah,
As I understand it, and hope I don't mess up with this explanation...the ANA test measures the group of autoantibodies, of which the SSA and SSB are a subset. So if your ANA test is negative then it is logical that the subsets will be negative as well.
For me, and for many others, this is not the case. In fact, only 40-70% of people diagnosed with Sjogren's have tested positive for ANA. I've never read an explanation for this. And it sounds like your "expert" is rigid and linear in his thinking. That's fine for mathematics, but biology is different story.
You may wish to see this doctor for a follow up appointment just to see what the results are. And you are right. You don't have to take his advise. ;)
"Rigid" is the word I used to describe him to my family. The comments he made about other past health problems of mine revealed the same thing. Diagnosing auto-immune diseases, from what I have heard, it is much more complicated than this. I am surprised someone like this is even in this field.
I have the test results and initial report which is how I know the SSB was not completed. That is very stupid to not do the SSA and SSB if the ANA is negative.... I swear he said he was repeating the SSB and then he just didn't. If he really was an expert, he would know this, right?
I dread going. I had a few nights in the past week where I woke up so upset, I couldn't go back to sleep...If I go, I will just have NO expectations other than getting through the appointment, period....
Thanks!
Leah
Lisabeth, I had been after my GP to run tests for ANA on me. He did and they were neg. Once it was mildly positive. Fast forward several years and he referred me to a rheumatologist. That rheum ran tests on me and said there was nothing wrongwith me but osteoarthritis. Well,l I was so sick I could hardly stand to lay down on my stomach or back it hurt so bad. I went back to my GP whining. He set me up with a university hospital immediately.
Within two weeks, I had my appointment and a positive diagnosis for Primary SJS. It's been over 4 years ago and I forget which I was positive for either SSA or SSB and I had the speckled pattern. No doubts either from 3 of my other docs, including my GP, ophthalmologist, and my new rheumy. Even my dentist. I had a return appt set up with the original rheumatologist for a couple of months down the road. They set it up for me. I was going to cancel it because no way I'd ever go back there. BUT, I did not cancel the appointment. I threw wrenches into all of their bloomers.
I talked with the original dr and said I am positive for SJS after you told me I wasn't just two weeks ago. I knew he'd try and say I turned positive in 2 weeks time. I was ready for that and the ratio I had (I forget) no way would I have time to get that high. So, in other words I went back to make him eat his words. I said "I wanted you to know that I WAS positive after he told me otherwise" and that I was being kept from getting medical treatment. Turns out he had not tested for the SSA/B because it had just been done a little earlier and the tests are expensive. The U Hosp tested me for everything and took 12 vials of blood. You go girl and if you feel like going back to him for a little bit of fun, go, be nice and smile and then tell him what you feel. Lucy
Thanks. It seems like people go through quite a bit to get diagnosed. The one thing I despise are dismissive doctors who don't listen to their patients. We are PAYING THEM! And..in this case, I am paying quite a bit out of pocket for this "expert" opinion to have someone talk to me with complete disrespect. And for no reason! I don't think I have the energy to have a bit of fun because I have gone through a lot of medical problems for 20 years and am just tired......
Leah
Geeze...why do we have to put up with doctors like this? I don't know if my story will help you or not:
When I was first diagnosised (by an ENT) she referred me to our local rheummy. The appointment was horrible: he was dismissive and his views were very out-dated. A few weeks later when my mouth broke out in sores, he refused to see me - having his nurse tell me that SjS can't cause mouth sores, so it must just be a virus and I should go to my family doctor. Huh? SjS doesn't cause mouth sores?
My family doctor was sympathetic but bewildered. Said it looked like an auto immune reaction to him.
To make a long story short, I ended up calling the clinic liaison to complain about the rheummy's reaction. She was very kind and I got a quick appointment with the rheummy -- and he treated me like shoot! He was angry I'd went over his head, angry I'd complained about it, stuck to his opinion that SjS doesn't cause mouth sores.
At that point, I decided not to waste any more energy on him. I researched online for the closest university medical center and made an appointment with the rheummy there. University med centers have the reputation of having the newest information. I've never regretted it (except for the long drive).
So, my advice is don't waste another moment on him. Find a better fit: someone you can rely on. It may take some time (I had to wait four months to see my new doctor for the first time) but it's worth it.
Good luck and be good to yourself!
Deb
Deb,
I think you are right. Right before I logged in here, I canceled my follow up appointment. I do not deserve to be treated in a disrespectful way. NO PATIENT does. I mean I was very calm and polite to this doctor and yet when I asked a very simple question, he became angry and started arguing. I said earlier, it seemed to have nothing to with me. I am guessing that other patients have given him a hard time.
So..he said that Sjogren's syndrome is really SICCA symptoms and that is it. That the other problems are RARE.
Do you all think that is true??
We don't have a good university where I am. I agree with you by the way. For the other illness that I had, I flew to another state. I am going to ask on a separate thread about Sjogren's centers on the west coast.....
Thanks so much....
Leah
I don't think other problems from SS are all that rare. I guess it depends on what you define as "other problems" though. From everything I've read and the videos I've watched, it seems that primary SS patients fall roughly into thirds: about one third will have SICCA symptoms alone; about another third will have more systemic manifestations including fatigue and joint pain, but are generally well managed on medication; and another third have more serious manifestations and require more intensive treatment.
My rheumy NEVER told me that SS was "just dry eyes and dry mouth." In fact, he made it a point to let me know that SS can explain all sorts of issues I'm having from hair loss (even though that's also genetic) to joint pain, chronic and sometimes severe fatigue and gastrointestinal problems. I think FATAL complications from SS are rare, but systemic complications are not.
I had all the classic blood work for primary Sjogren's, and I know for sure my issues with it are beyond my eyes and mouth!
Sharyn
Yes, mshistory, that is exactly right and it was pretty upsetting. I had read a lot before the appointment and I do not think this doctor liked that. TOUGH. I have been in the medical field my whole life as a professional and I can read research articles as well as he can.... Very disappointing.... He said in Primary Sjogrens other things were RARE. To me rare is 1% of cases, maybe 5%, but not 1/3 !! According to the articles on the front of this site, one one of the doctors wrote 20%. That is still not rare to me.....
Leah
well,
I've been there too.
One doctor, who is very kind, polite, and always listens and lets me talk about what I think.
however, I have sjogrens and fibromyalgia.
I guess that makes it secondary sjogrens?????
anyway, anytime i speak of the aches,pains,fatigue,dry cough,etc
he almost NEVER (if ever) will agree that any of these things are from sjogrens...
the pain/fatigue he says is the Fibro.
I cant get him to say'yes, thats Sjogrens.
so...what??? I have Sjogrens but none of the symptoms??? lmao
so frustrating.lol
everything is always to be blamed on the Fibro.
He has never argued at all about the Sjogrens diagnosis, just points every symptom
to being Fibro.
He isnt a Rheumy by the way...
he just confuses the heck out of me.lol
Every doc is different,, some stay up to speed on medical things and others just dig there heels in and refuse to let go of there outdated methods,, while we suffer they dont and tell us it has to be this or that or the old in your head game,
when my rheummy found out I had went to Mayo to find the reason for the small fiber neuropathy,, he caled me at home and I got the riot act,, because while i was there they said Ididnt have SS,,,, that is why he was upset,, I had to tread lightly,, I see him in a few weeks, i know a person that sees him for SS, but she has a mild case,, but sereopositive,, trouble with getting in to see these (experts) is the length of time, some may just need to take one look at you and pretty quickly know something is going on,, after two years of wandering the forest, the rheummy I have said after meeting with 4 of his minions that he believes I have SS,, I dont doubt him,, but in the back of my mind,, do I really,, or do I have what I think is Igg4 disease,, it all fits, so have i wasted another 3 years of frustration getting things done that only added insult to injury when all that I might have needed from day one was a course of long term steroids,
Hi lisabeth,
I am so sorry you were treated that way. I certainly hope you can find someone more knowledgeable as well as compassionate and respectful to work with you and for you.
Another option you might be interested in, is simply running the tests yourself, especially if you're already paying out of pocket. This is what I do, and then hand any abnormal results to the doc. They can't really argue with that.
There are several online labs that offer tests directly to the consumer. There are a variety of locations for each lab, so check several out. I've used two of them, and have been very pleased. Both use LabCorp, which is the lab many hospitals throughout the US use (you can Google Labcorp to learn about them). Anyway, here's one of the online labs I used: ANA direct: $49.00, and SSA/SSB for $116.25. Can't beat those prices.
mymedlab.com insite search for immunity/ana-direct
Scroll down on left to get to SSA/SSB
Beats giving $300.00 to some a** of a rheumy for 15 minutes of worthless "help". You can sign up and have your blood drawn within 24 hours. Then shop for a doc who will respect you and help you.
I have to drive 1.5 hours to get to the nearest location for either of the labs I'm signed up with, but it's worth it for me. I am seronegative for SS, but want to test more frequently than my docs do (translation: more frequently than what insurance wants to pay), so I just do it on my own.
Edit addition: Thanks, Linda, for your edit, my apologies. I should mention I'm in no way affiliated with the lab I mentioned other than being a consumer who has used it. There are several labs available online from which to choose from.
really, Does it really make a difference if you do or don't get a sjogrens diagnosis???? You may well have both the low IgG4 issue plus sjogrens. The IgG isn't going to cover everything that you complain about anymore than the sjogrens is.
We all tend to blame everything on the sjogrens and sometimes it may be something else. One thing is for sure, when we have an inflammatory reaction going on in our body the white blood cells tend to congregate in that area. This is true of sjogrens as well.
I tend to think that some of our sjoggie mucus issues can be dryness at times alternating with this darn thick mucus that comes when all those white cells congregate and cause trouble. Remember that when we have a cut or something and the white cells come to the cut to help heal the area we get swelling and redness and often an amount of yellowish white drainage. That drainage is part of the healing process.
Well, we aren't trying to heal but out white blood cells are all heading for our organs and systems and trying to kill them off like they are an invader bacteria in a cut. Thus the swelling of our tissues and the increase in the drainage. Our body knows how to attack to kill invaders, it isjust trying to attack us thinking we are an invader as we sit innocently by twiddling out thumbs.
The IgG4 is a small part of the white cell that has the job of protecting certain tissues and if these cells get too low we can get more infections. My hubby has low IgG 1,2 and 4 and gets infections all the time in his sinuses and lungs. He is now on prophylactic antibiotics 3 times a week ongoing.
He has been having infections a lot for many years and the past 4 years it has been much worse. We were totally surprised when he got this diagnosis. I have low t-cells and he has the low IgG levels. One of is on an antibiotic at any given time pretty much. Hope you can get this straightened out.
If oral meds don't help the low IgG levels then IVIG can be used. I would think that IVIG can also be used for your neuropathy also. Also, hasn't anybody mentioned Go-Lytely to you??? This is a product that can clean your bowels out with less cramping and agony.
It needs a prescription and can be taken in small amounts *you mix the powder with water and drink it) every third day or so and it literally "washes" the colon out. I am amazed that the docs are not treating your bowels in this way. There are many people in long term care facilities who have neuropathy and bowel problems and this is what is used.
It works well. You have to hang around home and the bathroom on that day, but it doesn't make a person as sick. This is the same product that is given by many radiology departments as a prep for a colonoscopy. People who have neuropathy are always on medications and some of them increase the constipation and this product works very well.
I have used it 2 different times as has my hubby and when you have a colonoscopy you have to mix up a gallon, drink the first 2 quarts in the evening 8 ounces every 15 minutes and the in the morning drink the other 2 quarts. You just take a book, a glass and a 2 quart pitcher of Golytely to the bathroom and sit on the toilet and drink and let it do its' thing. It is a wash---not a laxative.
Please ask your docs about this ASAP. Irish ;D
there is another product for bowel cleansing that comes to mind
I had to use it for a bowel prep once, and because i cant consume large amounts
of liquid in a short period of time, my doctor had me take it
(check with your doctor first of course)
sodium phosphate in a 1.5 oz bottle
(CVS carries it for sure) as well as walgreens and other drug stores
by brand, i believe Fleets makes it as well
it is only 1.5 oz,flavored wich helps, and under 5 dollars
its basically sodium phosphate and glycerin combination, and you drink it.
toss it down in 2 shots (gulps not a straw), mixing it into other stuff only prolongs the yuck.lol
its not so much 'grossness' to have to choke down.lol u get it over with faster!
still tastes salty as all heck, but this was better than some other things out there
given your doctor says its ok for you specifically
i didnt experience the cramping and bloating that other things like bisacodyl tabs can give you.
worked well for me, but check with your doctor :-)
You have to be careful with these bowel cleansers, especially the Fleets type because it can cause you to be dehydrated and upset your electrolyte balance.
I don't have severe gastrointestinal problems, so 400 mg of Magnesium Glycinate a day keeps me comfortably regular. Wish I'd known about it 20 years ago.
Calli
absolutley have to be careful with these things-always ask the doc first ;D
Quote from: Calli66 on August 19, 2011, 09:23:42 AM
You have to be careful with these bowel cleansers, especially the Fleets type because it can cause you to be dehydrated and upset your electrolyte balance.
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Very dangerous if you have A-fib or other heart problems. I had a bad experience.
lizbeth... I'm sorry you had a bad experience!! Where are you on this now? what is your game plan?