It took me 7 years, from the time I was in a car accident that I could never get over, to get a full, complete diagnosis. The first confirmed diagnosis I had was Sjogren's Syndrome, that took several repeated tests before it showed up 'false positive', and then it showed up literally 'off the charts high'.
The first Rheum, denied I had that, or Fibromyalgia, or any autoimmune arthritis, the second neurologist, after several visits and expensive tests, diagnosed me as 'stiff', it has been a very long, exhausting, expensive journey for me. How about you?
Diagnosed in 1992 and it took about 5 yrs. meanwhile, I kept losing teeth due to uncontrollable cavities, burning mouth every time I ate and horribly gritty eyes. Neither my dentist nor GP could put a name to my symptoms. Finally, an article in the newspaper talked about Sjogrens and Iknew that it sounded like me. It said to see a rheumatologist , which I did. He did a lip biopsy and many blood tests and I tested positive for Sjogrens. Long, painful road, but now, due to more awareness, it is becoming easier to diagnose. Thank goodness!!
I’m 32 and male and currently being worked up for this. I had dryness issues come on overnight in January. I’m miserable and have been getting jerked around by rheumatologists. How do you guys cope? I’m so depressed, I’m supposed to be starting my life. The symptoms came on a week after I proposed(she said yes) and have gotten worse. I am supposed to start a new job in August which requires a good amount of talking but not a teacher. Also moving and buying a new house. I’ve been very distraught but have at least been able to get some evoxac and salagen and restasis. Do the symptoms just keep getting worse? I have dry sinus, mouth, bum, eyes, ears and they’re pure misery. At my last rheums appt he told me I haven’t deteriorated enough to make a clinical diagnosis and I’m now going for a biopsy, that statement has made me more depressed. Do you just keep getting worse and worse?
I’m in my 50s. I had Lupus when I was younger that went into remission. For a few years, I had dry mouth and eyes. Then, I had dental work where a dentist made a mistake. It snowballed into a horror story with Trigeminal Neuralgia and fever. I went back to neuro to double check that Lupus was still in remission. Bloodwork showed I had SS. This was two + years ago. I was fortunate to get the dx rather quickly. Symptoms have steadily worsened and i have had difficulty getting good information. Rheumie takes Lupus seriously, but NOT SS.
I know about tooth loss, I currently have 7 of my own teeth remaining, the rest are plastic! Many times when pulled, I was told there was no reason to be seen or could be given, but I finally got the SS dx and THAT is the reason.
So many times it is blamed on heat/AC, meds....and it's so much more!
Oh yes, the eyes! I buy eye drops by the dozens, cannot even get through the night without drops! And after a while it feels like you've been putting Elmers glue in your eyes, I have to use water before I can even put more drops in, to cut the 'goop'!
What a bummer that this is hitting you at such a young age, everyone deserves to be young and well!
What a hell of a thing to say to a patient! Are you kidding me? "you haven't deteriorated enough"! I'm just appaled by that kind of attitude!
You say 'bum', are you UK, Australia, NZ, in a socialized medicine network? Or can you change Doctors? No wonder you are so depressed!
In my opinion, you are only as good as your Doctor is good, now I know they are not miracle workers, but having the right one means everything! Do you feel the same way?
I don't want to out step my bounds here, but cannot believe his approach!
Oh, I am sorry beyond words to know you suffer from TN. That must be a pain like no other! My sister in law suffers this, and when she told me I educated myself about it, I also know several folks here on BF in the TN group. My SIL's TN was from a root canal, and nothing really went wrong, that I know of.
Are you having any success with Neurontin or Lyrica? Sounds like you really do have a good Neurologist, very knowledgable in autoimmune, which seems rare in most cases!
Lyrica helped, but I had bad side effects. I use a compounded cream on my face that has Neurontin in it!!! It also has lidocaine and capsaicin. All things known tO help with nerve pain. It took a few weeks to work, but when it did… It’s like a daxx miracle! Also take Elavil by mouth. Horrid experience!
BTW…do you have implants? Grafts???
Maybe earlier poster who used the word “bum,” meant what we call in the US “rear end???” LOL??? Ugh! What a difficult illness!!!
I was very ill in 2005 and never fully recovered my stamina. Two years later, on my 70th birthday, I went to my nurse practitioner because of blue fingers and sudden spells of extreme fatigue. My blood tests showed very low potassium so I was sent for a full battery of tests and referred to a nephrologist who diagnosed RTA and Sjogren's. (The blue fingers were Raynaud's.) I am glad that I didn't have to go through the long ordeal of being diagnosed that so many of you have. I see a rheumatologist every year or so, but I rely more on my kidney doctor to monitor the Sjogren's and RTA. By improving my already healthy diet and eliminating gluten, I have been able to slow the process down. I went to a cornea specialist for almost 3 years and am able to manage the dry eyes somewhat so that I can read and drive again. My strong healthy teeth have deteriorated badly and I am starting the process of getting implant supported dentures. I feel lucky that I was extremely healthy until the illness in 2005 which set my immune system off.
I just said no to implants, just not going to go through that. I have tremendous admiration for all that do, but I just cannot do that invasive anymore, not even that, I still have 7 to be pulled eventually, that will be more than enough for me! I have a good looking full upper plate, and a lower partial, use Fixodent or Poligrip to keep them from flying across the room! ha!
Glad you found something for the dreaded TN pain! I have Sciatica, that's bad enough!
There you go, 'rear end'!
So sorry to hear of the RTA, I had to look it up, so here is the link for everyone, glad your kidney Doctor is so well versed in SS, you are very fortunate!
Yes, I also have Raynaud's Phenomenon, Terri started a very good group here on the SS site for Raynaud's. Hopefully this brutal cold, wet winter will soon END!
Glad to know that going gluten free has made such a difference to you, I tried that for a year, and had no difference, but I do take digestive aids and probiotics. Who knows when the time may come to give it up though!
See, I think that even though we may be genetically predisposed, there is always a 'trigger' that sets this into motion too! Mine was the last car accident, though I can look behind and see this at my heels throughout my life!
Thanks for responding, look forward to getting to know you!
Know several people who have dry eyes and take restasis. You still may need to use regular eye drops for dry eyes even though your taking it. It doesn't cure, but it does relieve some of the symptoms. You just won't have to use the drops as often if at all.
Stopped working for me. Now use Bausch and Lomb eye wash before I instill eye drops. Have also noticed that the salagen (pilocarpine) also helps the dry eyes. Yeah I know it's for the mouth, but I've heard that it helps this way from other people.
Also, you can take salagen 5-6 times a day if you can convince your doc to up the dosage. I take 5/day.
You got to hold on.
I tried Restasis years ago, and went through the roof, my eyes were fire red and worse than before I started it. I tried it for a couple of days, and my husband asked what the hell happened to my eyes, I went back to Doc and he told me to stop using them! I told my husband this, and he immediately threw them away!
So we need to have the SS talk Monday, it may be the way to go (Salagen) Hopefully I can get somewhere with him on the SS, or it may require a trip to Hopkins.
I am a firm believer that you are your own best advocate, having said that, I got a diagnosis in a year and a half!! I had every possible test (one came right out of a torture chamber from Torquemada's dungeon!) I was led to believe that it was in my head and was prescribed Librium!! And this my dears was at the foremost Sjogren's Syndrome Clinic in San Francisco; I left confused, bewildered and terrified and a year and a half later after insisting with my Internist to look at the list of symptoms I was presenting and those I found (on my own) on the internet attached to Sjogren's Syndrome. That started the wheels in motion; I was sent to a Rheumatologist, then another Rheumatologist, a dentist specialist in Sjogren's Syndrome (at the SS Clinic I mentioned above and had reviewed my case the first go around dismissively) she did the infamous biopsy, two eye specialists who did a myriad of tests with drops of many colors and two weeks later they confirmed what I had suspected months before: Primary Sjogren's Syndrome!!!!!!!!!! The End!
PLEASE READ THE FOLLOWING:
2012 Oct 11;120(15):3142-51. doi: 10.1182/blood-2011-11-391144. Epub 2012 Aug 27.
Allogeneic mesenchymal stem cell treatment alleviates experimental and clinical Sjögren syndrome.
, Wang D
, Liu D
, Fan Z
, Zhang H
, Liu O
, Ding G
, Gao R
, Zhang C
, Ding Y
, Bromberg JS
, Chen W
, Sun L
, Wang S
Sjögren syndrome (SS) is a systemic autoimmune disease characterized by dry mouth and eyes, and the cellular and molecular mechanisms for its pathogenesis are complex. Here we reveal, for the first time, that bone marrow mesenchymal stem cells in SS-like NOD/Ltj mice and human patients were defective in immunoregulatory functions. Importantly, treatment with mesenchymal stem cells (MSCs) suppressed autoimmunity and restored salivary gland secretory function in both mouse models and SS patients. MSC treatment directed T cells toward Treg and Th2, while suppressing Th17 and Tfh responses, and alleviated disease symptoms. Infused MSCs migrated toward the inflammatory regions in a stromal cell-derived factor-1-dependent manner, as neutralization of stromal cell-derived factor-1 ligand CXCR4 abolished the effectiveness of bone marrow mesenchymal stem cell treatment. Collectively, our study suggests that immunologic regulatory functions of MSCs play an important role in SS pathogenesis, and allogeneic MSC treatment may provide a novel, effective, and safe therapy for patients with SS.
I didn't really notice a big difference in going gluten free, but since it is a culprit in so many autoimmune problems, I I think what has really help me most is juicing every day, using ginger and turmeric and oil pulling. I am going with implant supported dentures because my mouth is so dry that I won't be able to tolerate standard dentures. The prosthodontist and the periodontist agree with me after spending some time looking at my mouth. I am certainly not looking forward to it.
The people that I know who have implants, especially recently, love them, once they are healed a bit.
You know, we bought a juicer years ago, and even knowing not to mix fruits and vegetables together, I could just never digest the stuff, even with the digestive enzymes I take. Any thoughts on that?
Going gluten free has helped me. It is not a huge difference, but the difference is clearly there. Enough for me to take notice. More energy, less aches. I don’t think it has helped with dryness. hOWEVEr, in all fairness, at the same time I went gluten free, I also stopped sugar, and big time reduced dairy and corn. I also increased my water intake and do not eat anything unhealthy. So…no soda, alcohol,packaged foods, salty foods…etc. I reduced my coffee to a total of one cup a day and only use a max of one Truvia (fake sugar) packet a day. It has been soooo worth it.
Yes. going Gluten free and juicing (I make a Green drink with green veggies, blueberries, Aloe Vera juice and Flax seed oil); when I don't drink this I have major flare-ups!
Re Digestion and juicing
I would think it would almost be easier to digest, especially if you are actually “juicing” and not blending. In juicing, most of the fiber-pulp is removed. This makes it easier to digest. I think the concept is that this way the vitamins are absorbed quickly and efficiently by the body.
However, that being said, the first few times I got a fresh juice at whole foods, I did have some difficulties drinking it. I ended up only drinking half.
I get a small amount of apple and pineapple and a lot of spinach and kale. (However, I have heard its best to avoid fruit).
Eventually, I was able to drink a full glass.
I suspect the pineapple might make it easier to digest…as well as the juicing as opposed to blending.
For me, it felt like a GERD issue originally. I drink a juice of primarily vegetables about three times a week. I do think it makes me feel better overall.
Thanks for the juicing tips! My husband was just saying that he wants to get the juicer back out. I'll have to take it slowly, and see if I can 'get it down, keep it down'.
Now help me out here, as far as mixing vegetables and fruits. I first acquired the 'Back to Eden' by Jethro Closs years ago, and he warns not to mix the enzymes of these two foods together. That fruit should be eaten on an empty stomach, 30 minutes before anything else, and nothing should be eaten with it.
Anyone familiar with this theory?