I know some of the blood tests that are used to help diagnose Sjogren's. I was wondering if it is accepted in the medical community that you can have Sjogren's and have good bloodwork? I know there is a lip biopsy that can be done. But that is controversial and not real reliable.
My bloodwork always comes back normal. But I have all the signs of Sjogren's. My problems get worse every year the joint pain, muscle pain, fatigue, etc. But the reason I'm thinking Sjogren's is because my Shirmers test is 0 in both eyes, and I've had real dry sinuses that my ENT doc always mentioned to me in my appointments. Also the problem with dry mouth. With me being a young male, I shouldn't have any of the dryness. So, that in combination with the physical problems points to Sjogren's.
Though, the problem is the last two Rhmys I've seen didn't do much and acted like good bloodwork means no problems. And they really weren't interested in talking about Sjogren's. I'm going to see a new Rhymy that some on this board see. So, I'm hopeing he's a little more open minded. I hope he doesn't want to rely on a lip biopsy test as I don't really have the money to spend on an unreliable test that may leave permanent numbness.
I noticed in this article page 6 bottom left column: "The majority of younger patients who appear with moderate to dry eye have an autoimmune disease." I'll probably print that off and bring it with me.
http://www.ophmanagement.com/digsupps/om/OMD_October.pdf
Answer to that seems to be "it depends who you see and what their criteria is".
Many of us have negative blood work and were diagnosed from symptoms. If you look at my blood tests, you'd say I was a 55-yr.-old woman in excellent health! After a couple of docs not taking everything as a whole picture, I found a great primary doc who diagnosed me and is treating me.
I'm glad you'll be seeing a new rheumy. Hopefully they will listen to all your concerns and take all your symptoms into account. Good luck and keep us posted. ;)
It's so frustrating to not have a name for What Ails Ye. I know that a definitive diagnosis won't be a cure, but it will certainly be a vindication.
Stick with it, Jason! And, as Joe S. might say, you might want to bring an advocate along with you.
There's also a salivary function test called a salivary scintagraphy and there are apparently ways of measuring salivary flow. (That's about all I know about either of these tests ;) )
But it does seem that there are either tests they could do to check for Sjogen's without having to do a lip biopsy, especially if you've already had the Schirmer's.
It is accepted in some medical communities to have a diagnosis while being sero-negative. Places like Mayo won't consider it and most other large big name facilities might IF the lip biopsy is positive. Speaking of the lip biopsy and your comment. It is in fact a reliable test...especially considering the tests available. As long as the pathologist reading it is experienced and uses a standard/accepted grading scale, it is quite accurate. If you think about it, an autoimmune disease is the process of antibodies attack your own tissue. The examination of the salivary gland from the lip biopsy is to look for these lymphocytes. It's pretty cut & dry as I see it. If there are antibodies present (in large numbers) where they are NOT supposed to be and damage has resulted in their presence, then it can be seen on the biopsy and result would be positive. Sometimes people come back with negative results but learn there was actually some lymphocytes present...just not enough for a positive result. These people are probably in early stages of Sjogren's and any good doctor would treat accordingly if moderate lymphocytes are present. Those with completely negative results (no lymphocytes at all) are likely suffering from sicca (not Sjogren's) due to medicines, neuropathy, or other things causing dry mouth...which are numerous.
Of course the biopsy can have some numbness and even leave a small knot. These are just risks you have to decide whether you can live with. I personally have both a small knot and numb area, but neither are worth complaining about.
IF your doctor is willing to treat (with plaquenil or other) without the biopsy, then there doesn't seem to be a need to have it done and I would advise against it. I am sero-negative and my doctor at Johns Hopkins (where they have strict criteria) would not treat unless the biopsy was positive. Mine was very positive and worth the small numb area.
Quote from: anita on October 14, 2011, 12:01:52 PM
It is accepted in some medical communities to have a diagnosis while being sero-negative. Places like Mayo won't consider it and most other large big name facilities might IF the lip biopsy is positive. Speaking of the lip biopsy and your comment. It is in fact a reliable test...especially considering the tests available. As long as the pathologist reading it is experienced and uses a standard/accepted grading scale, it is quite accurate. If you think about it, an autoimmune disease is the process of antibodies attack your own tissue. The examination of the salivary gland from the lip biopsy is to look for these lymphocytes. It's pretty cut & dry as I see it. If there are antibodies present (in large numbers) where they are NOT supposed to be and damage has resulted in their presence, then it can be seen on the biopsy and result would be positive. Sometimes people come back with negative results but learn there was actually some lymphocytes present...just not enough for a positive result. These people are probably in early stages of Sjogren's and any good doctor would treat accordingly if moderate lymphocytes are present. Those with completely negative results (no lymphocytes at all) are likely suffering from sicca (not Sjogren's) due to medicines, neuropathy, or other things causing dry mouth...which are numerous.
Of course the biopsy can have some numbness and even leave a small knot. These are just risks you have to decide whether you can live with. I personally have both a small knot and numb area, but neither are worth complaining about.
IF your doctor is willing to treat (with plaquenil or other) without the biopsy, then there doesn't seem to be a need to have it done and I would advise against it. I am sero-negative and my doctor at Johns Hopkins (where they have strict criteria) would not treat unless the biopsy was positive. Mine was very positive and worth the small numb area.
The thing is I'm real suseptible to damage. I get a cut, it heals. But it is still painfull for months. I had a minor back strain years ago. Turned into a permenent sore muscle that bothers me everyday. So, I try to avoid getting bumped or cut, etc.
They say you can have a negative lip biopsy and still have Sjogren's. I had read of some who had to have it done twice. Because the guy who did it biopsied the wrong area, or didn't biopsy enough. I don't really like the idea of removing salivary glands anyways. As I'd want as many as I can have.
Though the Rhmy office got back to me and mentioned I'd need a lip biopsy for the Sjogren's. Though, I don't have the money for the test. And I don't want to risk long term problems from it. The first time appointment is $400 to see the Rhmy. Plus it will cost me over $100 to get there.
I'm a young male with 0/0 Shirmers and dry sinuses and mouth. Plus all the physical problems. I hope that is good enough for this doc. As there really isn't any other explaination out there at least for the dry eyes, sinus, and mouth. I don't take any medication that would cause the dryness. I've had no chemo treatment. Plus its already been going on for years. So technically I shouldn't have any dry eys, etc. because that usually is an "older" persons illness.
I know one of the Rhmys I had seen didn't like the lip biopsy. I forget why though.
Hi Jason,
What are you hoping to achieve treatment wise? If your primary symptoms are severe dry eyes and dry mouth, aren't any of your doctors willing to at least treat your symptoms? It seems like you could at least get a Rx for Restasis and something like Salagen or Exovac if you have severe dry mouth as well. If you aren't experiencing any systemic effects (e.g., joint pain, extreme fatigue, etc.) then Plaquenil may not be recommended for you anyway. I guess it just seems that some doctor should be willing to treat the symptoms you are suffering from regardless of an autoimmune diagnosis since there are medications that can help with dry eyes and dry mouth.
Quote from: mshistory on October 14, 2011, 06:13:25 PM
Hi Jason,
What are you hoping to achieve treatment wise? If your primary symptoms are severe dry eyes and dry mouth, aren't any of your doctors willing to at least treat your symptoms? It seems like you could at least get a Rx for Restasis and something like Salagen or Exovac if you have severe dry mouth as well. If you aren't experiencing any systemic effects (e.g., joint pain, extreme fatigue, etc.) then Plaquenil may not be recommended for you anyway. I guess it just seems that some doctor should be willing to treat the symptoms you are suffering from regardless of an autoimmune diagnosis since there are medications that can help with dry eyes and dry mouth.
I recently got a script for Restasis. I do have a script for Salagen I just filled again since my dry mouth recently got bad to where I couldn't sleep. But I'll have to see if this new doc will do Exovac as they have patient assistance. Salagen is $100 a month.
My understanding is treament can help slow down the disease process. So, even if the dry eyes and mouth are the only problems, then treatment could lessen the progress of the dryness.
But I do have joint pain, muscle pain, etc. My lifes been over for nearly 15 years now. I barely made it out of high school as when my problems began. I had a real hard time getting out of bed. And then with the mental and physical fatigue and general sickly feeling and joint pain etc. , I could barely do my homework or pay attention.
I have to make myself do every single thing because my fatigue is so bad. Also brain fatigue to where I had to quit reading books over a decade ago. And I even have trouble concentrating to read a manual or something or following along. It's pretty bad. It pretty much feels like I've been slowly falling into a coma for 15 years. Like I'm halfway between normal and coma. The other big problem I have is I have real trouble moving my body. It's like having zero stamina. I just can't do much but sit around. It would be nice if I still had my mental function to where I could read books or work on projects or go to school and get a career or something. But all of that takes too much effort. Everything physically and mentally I do feels like I'm climbing a moutain. Every year that goes by, the more and more bed ridden I become. Though I've started doing some walking to help combat laying around all day.
If I were you, I would ask for the doctor to treat you based upon your symptoms for now (maybe restasis, exovac and plaquenil for starters). If problems persist or get worse and the doctor wants confirmation before using some of the bigger guns, then have the biopsy after your Medicare kicks in.
The salivary glands are tiny and taking 5-6 samples won't be noticed. It is important (as I said) to find someone "experienced"...like at a big name facility. You will always be able to find someone who has had a bad experience...especially online. Heck, there are lots of stories about docs who amputated the wrong limbs. Sometimes reading things online can be detrimental. You have to keep these things in mind and have trust in your physician.
There are risks with any test/procedure, even most medicine. You have to decide what you want in regards to your health care and what kind of intervention you are willing to do in order to feel better. Sometimes these decisions aren't easy. We all (here) understand this too well. Have a sit down talk with your rheumy and GP about options.
Quote from: anita on October 14, 2011, 06:37:20 PM
If I were you, I would ask for the doctor to treat you based upon your symptoms for now (maybe restasis, exovac and plaquenil for starters). If problems persist or get worse and the doctor wants confirmation before using some of the bigger guns, then have the biopsy after your Medicare kicks in.
The salivary glands are tiny and taking 5-6 samples won't be noticed. It is important (as I said) to find someone "experienced"...like at a big name facility. You will always be able to find someone who has had a bad experience...especially online. Heck, there are lots of stories about docs who amputated the wrong limbs. Sometimes reading things online can be detrimental. You have to keep these things in mind and have trust in your physician.
There are risks with any test/procedure, even most medicine. You have to decide what you want in regards to your health care and what kind of intervention you are willing to do in order to feel better. Sometimes these decisions aren't easy. We all (here) understand this too well. Have a sit down talk with your rheumy and GP about options.
Thanks. I'd much rather to just be treated and skip the biopsy. Sure some have complications, some don't. You don't know if it happens to you until after the procedure. But I do already know I have problems with healing properly from an injury. So, I have to be real careful.
That's also why I'm really afraid of getting injured in a car wreck. As I'd bet things won't completely heal up. The other bad thing is my state has a one year limitation for suing from an injury. So, that's not really long enough to determine the extent of your injuries. So, alot of people have to prematurely settle or prematurely sue and end up not getting all their owed. The other problem is finding a doctor who will treat injuries from a car accident. It sounds silly. But there are alot of doctors who won't treat car accident injuries.
I can definitely understand wanting to skip the biopsy - I don't heal well either, and it seems like I am always in that 1% of people who develop some weird complication. In fact, with my second surgery, I had a post-op infection. It was resistant to the first antibiotic, I was put on a stronger one, it seemed to go away for almost four weeks...and then came back! My doctor said he'd never seen that happen before... lucky me ::)
Quote from: mshistory on October 14, 2011, 07:11:08 PM
I can definitely understand wanting to skip the biopsy - I don't heal well either, and it seems like I am always in that 1% of people who develop some weird complication. In fact, with my second surgery, I had a post-op infection. It was resistant to the first antibiotic, I was put on a stronger one, it seemed to go away for almost four weeks...and then came back! My doctor said he'd never seen that happen before... lucky me ::)
Yeah, that's why I have to look into everything first since I have alot of weird things happen. Funny thing though. Is I remember over a decade ago seeing a physicians assitant about my problems at the health department. I was on state insurance then. And he was willing to run some tests to figure out what was going on. Then I guess the MD doc didn't like alot of tests being ran, so they had me start seeing the MD. And he pretty much told me I was too young to have all these problems that I had been dealing with. So, I ended up going somewhere else. But my problem seems to be that docs act like they've never seen anyone with all the symptoms I've got. So, since my BASIC bloodwork they always run comes up normal. They decide not to do anything.
I think I have a chronic urinary tract infection. As at the bottom of my bladder it feels like I have to pee all the time. Been that way for years. Luckily it tends to only bother me when I'm trying to sleep. As I keep going to the bathroom cause it feels like I have to pee. But several months ago a week after I had a bad problem with my dry eyes and burning. That place at the bottom of my bladder got to bothering me real bad to where I couldn't sleep. Went to the walk in clinic and they said I had a lot of white blood cells in my urine. Though I took the antibiotics for two weeks which didn't do anything. But then it started getting better, then worse. Then it went back to the way it was before. But sometimes starts bothering me more at times. So, I'm thinking its probably is a chronic infection that for some reason flared up. I'm going to see if maybe I could get a culture done on my urine.