Hi everyone,
Just to recap, my ENT I went to last week thought I might have Sjogren's syndrome. What made her suspicious is that I'm having swelling in my parotid salivary glands, dry eyes, and dry mouth, along with all of the neurological problems, muscle pain, etc. I had to go have a blood test last Friday. I got a call from the ENT's office this morning saying that all of the tests are negative.
Now, unless you've ever been battling a debilitating illness with no name for almost three years, you may not understand this next part, but I stood in my bathroom and cried.
Don't get me wrong, I don't WANT Sjogren's. No normal person would want an incurable illness (and believe me, I AM normal, despite everything else.) But I had so hoped that at last I would get some answers because all of my symptoms seem to point to Sjogren's. It was very disappointing to once again be thrown back into the pit of limbo that I've been languishing in since May 2006. (What didn't help either is that I forgot to take my baclofen last night, and my legs and arms are having horrible muscle spasms this morning. I was already almost in tears from the agony of Charlie horses that won't stop!)
I'm just so tired of all of the pain and fatigue and cognitive problems and everything else I've dealt with over the last three years, especially when I don't even know what is causing them. I know that having a name for it might not make a difference as the treatment would probably just be for the symptoms, which I'm being treated for now; but at least this monster would have a name and I could look it in the eye while it steals my abilities and rearranges my life. I hate this!
(Sorry for the vent. I know it's useless to rage against the unknown. But I think we all do it sometimes.)
Anyway, thank you all so much for your kindess and support these last few days while I waited for what I thought might finally be my answer. (I think I'm going to just give up looking for answers. There aren't any for me.)
My prayers are with you all.
Hugs,
Lisa
Hi Lisa:
Don't give up yet. As you have seen from reading through our many posts here, quite a few of us on these boards have had negative test results for years. The point is to find a doctor who is willing to treat the patient, not the test results. You need relief from the symptoms and validation that you feel crummy.
Whether or not you have a doctor willing to give you the label of Sjogren's, you are more than welcome to continue here, sharing tips on what works and what doesn't to relieve symptoms, as well as just general coping in daily life. You are one of us!
Genko
I guess, I'm wondering how you know you do not have Sjogren's Syndrome? It seems to me, all you know is that the test was negative.
Which test came back negative?
Genko's right, there is a pretty high percentage of Sjogren's Syndrome patients who are sero-negative and/or had a poor lip biopsy.
It is in all the scientific literature and has been proven.
If your doctor is acting like this is a "done deal" I think you MUST find a new doctor.
I'm so sorry for all this, Lisa!
Lisa,
My bloodwork is all negative and in fact looks perfectly normal. I have severe dryness. When I cry, I barely have tears. I have to take Evoxac in order to swallow food, my mouth is so dry. There is no question, I have Sjogrens. I do have antibodies for Hashimotos Thyroiditis though my thyroid has not failed. The thyroid antibodies, along with my symptoms were enough for my rheumatologist. Before my antibodies showed she was pushing for a lip biopsy.
Have you seen a rheumatologist? I'm sorry you are so discouraged.
Hang in there.
Anna
Hi Lisa :)
I think your reaction was a perfectly normal one. You've been ill long enough that you NEED that label. When docs say "Nothing shows" it's like they are questioning our sanity and then we question ourselves.
I don't know about you but because I couldn't get a dx for many a long year, my family also questioned my sanity and definitely thought I was extremely lazy.
When I got a 'label' I was elated and devastated at the same time because I wanted a name that they could DO something about. At least most docs don't think i'm nuts any more.
You know your body. You know something's up. If the doc's can't come up with a name demae symptoms - and dryness is measureable. So are spasms come to that.
Keep going! Take care - Scottie :)
Hi Lisa,
Don't give up! As the others have said....please find a good and open minded rheumy who will help you and treat the symptoms. I can totally understand your feelings of being let down again because you have no name for what your body is going through.....and I'm sorry for that!
Please hang in there and continue coming here......even though you don't have the name yet...you have so many similar symptoms that you can still learn about them and offer your own experiences to others.
And don't worry about venting here.....we all do it from time to time and it feels great to get things off of our chests! We would love to have you stay!
Lisa,
If you have the symptoms you need to have them treated. I too had negative serum, but found thru a very unwanted lip biopsy I was positive. As far as the Drs. treatment and helpful advice from this site, nothing changed after official diagnosis. Even the Rheumy who insisted on biop said he'd treat me with the same meds even if negative.
But I understand your frustration, has been an emotional rollercoaster ride for me. My advice is to know by your symptoms that there's a strong indication that it's Sjogrens and find out everything you can about alleviating your problems.
And know you are always welcome on this site. Finding this Forum was the best thing so far on this unexpected detour in my life.
Best Wishes,
Chico
Lisa
i completely understand, i went to rheumy last week, and was told fibromyalgia, even though my SSa and SSb havent even been done yet, nor lip biopsy.
again like you its not like a want sjogrens, who would ? but i need support and treatment and the peace of mind DX would bring after a long road, and its perfectly natural to cry, saftey valve, its let off steam before we explode.
Dont give up hope, just arm yourself with information , and keep talking it out here, your not alone
T x
Lisa,
Ditto on everything said by everyone here. Do not give up. I understand perfectly when you said that you would actually be happy to finally have a dx. I actually cried in relief when I was dx with Sjogren's. My family also just thought I was a hypo and lazy. Hang in there!
Lisa,
It took me 5 years to get a diagnosis. And like you, I'd cry when another test would come back negative, because in my family, they already thought I was a hypochondriac because I couldn't tell them what was causing all the changes in my health. I finally stopped telling them there was anything wrong with me, that I was "just fine".
The important thing for me, though, was that the rheumatologist I was seeing knew that was something going on and he treated me as if I had lupus or Sjogren's, his two guesses.
Is your doctor treating you symptoms? If not, I'd ask him why since it's well known that having positive blood tests can take years.
All my best to you. We're here to try and help you sort out any questions you have and to give you a solid shoulder to lean on when the going gets tough.
Tracy
Lisa:
Fully 30% of patients have Sjs and have negative bloodwork. And if the Sjogren's is secondary to some other autoimmune disorder, like Hashimoto's, your bloodwork may never be positive, even if you do indeed have Sjs.
I don't want you to have Sjs either, maybe it is fibromyalgia (and I don't want you to have that either) but I hope your doc will start treating you regardless.
Sue
Thanks everyone.
My ENT is not pursuing other diagnostic tests at this time. I'm currently getting a second opinion from Vanderbilt in Nashville regarding the partotid gland tumor that I have. I guess I should see someone else about the Sjogren's possibility too, since it seems that the negative test may not indicate that it's not Sjogren's after all.
But how do you find a doctor who is willing to press on? I've seen so many doctors - neurologist, rheumatologists, etc. since all of this started, and I'm so tired of just getting the old routine of "Well you don't have ___, because your test is negative and I'm not sure what you do have, so it must be anxiety. That'll be $25, please." I need a doctor who can connect all of the pieces and see the big picture, not just their own small piece of the puzzle. I need "Dr. House", but without the attitude. :)
Oh, and I do have some meds I take for symptoms that my neurologist has prescribed for me - baclofen for muscle spasms, Neurontin for nerve pain and tinnitus, etc. I've been taking baclofen for about 2 1/2 years, and I can't live without it, as I keep finding out when I accidentially skip a dose like I did yesterday.
I appreciate you all letting me hang out here with you. Even if it does turn out not to be Sjogren's, I do have similiar symptoms and can get a lot of advice and support here and maybe offer a few hugs in return. :)
Thanks again and big hugs,
Lisa
Lisa,
This seems to be a pretty common thing you are going through, it's frustrating, but don't despair. For years I new something was wrong and all I ever heard was, well you know, your getting older, 40 is not that old.
It wasn't until I went to my foot doctor, of all people, that I got on a path of a dx. He sent me to a rheumatologist, thinking that I
had rheumatoid arthritis in my feet. The rheumatologist said, you either have Lupus or Sjogren's and the tests showed Sjogren's.
I was so happy, not that I had Sjogren's, but that all my symptoms were not in my head as some doctors suggested.
Then it took 2 more years to find out that some of my cognitive problems were due to partial seizures. All I can tell you is, Keep on Trucken, don't give up.
Lisa
Don't give up. I went to my GP and he thought and my heart Dr. thought I had Lumpus or Ra. My GP did all the blood work and than he sent me to a rummy. I didn't know it at the time but my sister had seen the same rummy a year before me. He said she didn't have sjogres, but has all the symptom's. Well when I went into his office He looked at my bloodworm did a few things to me asked some guestions sent told me I had Sjogrens. I didn't even hear him, so when I went out to pay my bill I asked for a pamphet I am very shy when It comes to DR.s SO that is why I am going to have my daughter who is 28 take me to the eye specialist at John Hopkins I will write a list prior to visit but my daughter will go in with me. I am pretty forget ful so like I said don't give up. everyone is so different. I can't even believe the same dr saw both me and my sister and gave us different dianostis
Theresa
Hi Sjenny,
I am so sorry for all you have been through...but hey you still could have it.... I got lucky as I have stated before my internist dx me with Sjogrins the first time I had complained about my swollen glands... from what I am seeing that is just about unheard of... But you know every test she did was negitive but she still went with the Sjogrins and she treated my symptoms for it.... She was a very wonderful dr but of course she had been treating me for 10 years so I think she knew me very well.
I lost her as my internist due to her and her husband moving away and changing over to the research side of medicine. Well then I started to have to look for other drs and let me tell even after being dx for over 5 years I still had one dr tell me I didn't have sjogrins because all the tests were still coming back negitive. Oh yes he stated my swollen glands were just fatty glands... I had to laugh... if that we true let me tell you I would of been so skinny for one week or month then I would of been so fat!!!!! LOL sometimes you just got to laugh!!!!
Well I found another dr that worked with me even if all my blood test were negitive .... plus he even dx me with RA after a year or so with blood tests not always positive... also he dx me with thyroid problems.... but when I went to my new GP he said I didn't have thyroid...but you know I went back to my rheumy again and told him and he said yes you have it (I am in brain fog right now so I can't remember what he called it) hyperthyroid disease (I think) and it doesn't show with every blood test.... Also I did find out one more thing that all labs are not the same.... one lab might be positive another not so maybe see different dr in a different town then you live in that might have a different lab that they use.
All my blood test became positive 10 years later but it seem to take forever..... but at least all the drs still treated my symptoms.... So don't give up.... You know how you feel... Call around and find a Rheumy that knows about sjogrins (that has some patients with it)....and if you haven't been to a rheumy you might just be surprise.... I am sure they will treat you for your symptoms and at least that is better then not being treated at all....
Oh I see you have posted again before I got this post finished but I am going to send it any ways.
Take care and have a wonderful weekend!!!
Carrottop50
Hi there Lisa, I'd say nearly half of us here haven't got Sjogrens showing up in their bloodwork but most of us have it. Like the others say, it can take many years even decades for autoimmune conditions to show up in some people...frustrating I know.
If you keep a diary of symptoms with date etc and take it along to the rhumatologist, it may help.
I wrote down all my symptoms going back about 25 years and although my bloodtests were negative the rhumatologist said that he could see from the history that there was something autoimmune going on with me...plus it is in my family (Graves thyroid /hyperthyroidism). Of all the blood tests I've had over this period of time, only 1 showed up as indicating mildly Lupus, but that disappeared quickly ::) Many clued-up specialists know that you can be sero-negative and still have A.I's going on.
Good Luck,
Lesley (New Zealand)
I am one of those people that have negative everything. I have seen two local rheaumies with no luck.
One of the rheamies I saw said something that I have been meaning to ask everyone about. He reviewed my labs and biopsy, performed a physical exam, asked the usual questions, etc. He told me I had sub-clinical Sjogren's and did not think my case was "inflammatory". At that time I could only be treated for symptoms. If I ever developed "inflammatory" symptoms later on, then there would be more aggressive treatment.
For the most part, I agree with what that rheamy told me. But isn't it the general thought that Plaqeniel is first line defense and is supposed to slow the progression and help relieve many symptoms ( I know each person's reaction to Plaqeniel is different). Do the docs only give Plaqeniel to patients that have positive tests? Are you that are seronegative taking the drug? I don't understand how it's supposed to work. I would like to try it because it might help me.
Lisa-
I feel your frustration, and completely understand. I am going through tests and having them come up negative but having severe neuro. symptoms. I am sero-negative with dryness issues, but found a rheumy who prescribed Plaquenil for me because I have so much AI in my family.
I truly cracked up when you mentioned wanting a "Dr. House" to take on your case!! I said the same exact thing to my hubby the other day! :D Where are Dr's like that anyway? We want someone to test and test until they find the answer, not see you for 10 minutes then shrug their shoulders and say "come back in 6 months." Come on, would they treat their own spouses that way? >:(
I would suggest to you what people have told me--go to a University hospital. That is where research is being conducted, and usually a team of specialists review you & may know more about the disease(s) you are looking at. The only problem is you usually need to have the doctor you saw before refer you there. Sounds like from your symptoms that a rheumy and a neurologist would be in order. I just went to my local neuro, the one who said "come back in 6 months" and told him "Look, my symptoms are getting worse. I want to be seen at the University." So he wrote me the referral, probably glad to get rid of me.
Big Hugs go out to you, and keep the faith!
Hi no I'm not on plaquinel although sometimes when I get these weird things happen, I wish I was ::) I don't have any muscle or joint pain/involvement (not for 11) years but I did go through a bad patch 12 years ago with it...weird eh! I was given the diagnosis of Chronic Fatigue syndrome but then got the dryness symptoms mid 2006, so it's anyones guess :-\
Cheers Lesley (NZ)
Lisa as the quote goes " A rose by any other name ..." (would still stink lol). No matter what name they may ever give my problems the symptoms all still seem to be here to stay. I have always had negative test results for a specific AI condition. Yet here I am with raging neuropathy, stomach problems, dry everything, intermittent itching and cramping of the feet and legs, problem eye pressure, overactive bladder and the very latest optic nerve inflammation. Going strong for some one who's test always fall into the normal range.
Thank goodness I have doctors who take my problems seriously and treat each new symptom. I'm not really sure how I would react if they actually put a label on it all or even that it would really matter anymore. I have one doctor who has labeled it SJS and another who says maybe not.
So I have made a decision to accept and treat the symptoms as they come along and try to get along as best I can. On top of all my other issues I have had both knees replaced, carpal tunnel repair in both wrist and a thumb joint re-aligned. All of this has given me a huge wake up call to just work with what I have and be glad it isn't any worse than what it is. For your sake I hope you get the name that you need. For me "It" has become such a part of who I am now that there is no longer such an urge to name it.
Salsen, I actually had gotten to the point of not caring if I had a diagnosis or not too. After going through so many tests (most negative), I was just tired of the whole mess and was just content to have my symptoms treated, unless they got much worse. I stopped requesting tests and I haven't been to my neurologist (and MS specialist) in over a year.
Then this dang parotid tumor and associated swelling came along. When the ENT suggested Sjogren's, I had high hopes that at last this evil thing had a name, not that it really matters, but at least it would prove to my family that I'm not nuts. And when someone asks me why I'm limping or in pain, I would be able to tell them instead of having to go into a big long explaination that the doctors think I might have whatever, but we're not sure yet.
Like you, I've had a lot of other health problems in addition to WETHTI (WhatEver The Heck This Is) syndrome. In the past three years, I've been diagnosed and treated for early stage cervical cancer, I've had carpal tunnel release surgery on both hands (and neither surgery worked), I've had surgery to repair my very deviated nasal septum and soft palate because I have severe sleep apnea and thought that might help (it did), I have GERD and IBS, hypertension, metabolic syndrome, left heart ventricular hypertrophy, thyroid nodules, a tumor in my parotid gland - the dang list just goes on and on (and I'm only 46!) Until three years ago, I was very healthy. All of this just hit like a ton of bricks, especially the cervical cancer, which really taught me to value each and every minute of every day because life is fragile and a precious and wonderful thing.
My gosh, you sound like a sjogrens patient. Sjogrens patients suffer from tendonitis anyplace in the body and carpal tunnel surgery is very common. Also, the GERD and thyroid problems are also very common. Have you been checked for Hashimotos which is autoimmune thyroid disease?
I was ill for 40 years and just got diagnosed at our state university in 2003. I then found a good immunologist who diagnosed me with the myasthenia gravis and hashimotos and severely low t-cells.
I am curious if you have weekness in your arms and legs that improves with rest. This can be a symptom of myasthenia. Also, if you have myasthenia or sjogrens a swallowing disorder can cause one to have more problems with the sleep apnea--especially if the soft palate loses muscle strength and doesn't stay up where it belongs. Have you ever had droopy eyelids or swallowed and had food go up into your nose? If you have issues like this make sure to see a neurologist and get checked for myasthenia gravis. They check the acetylcholine level plus the antistriated muscle antibiodies need to be checked. Negative acetylcholine levels are not uncommon in myasthenia. Good luck and keep us updated. Irish ;D
Lisa,
I just want to encourage you to hang in there. just keep going back to the specialists, and try new ones when you can.
I had a friend who, like me, had no idea what disease I had for ten years. She just cared about me enough to say, over and over, "Call the doctor back. Tell them your legs still hurt. try a new doctor. they said you're crazy?? Screw'em. Try a new dr. again!" It was that inch by inch search that led me to my diagnosis of SJS and FMS.
By the way, tell each and every doctor you see for any reason, about your symptoms and pain. It was my heart specialist who listened about my fatigue and sent me to a Sleep Dr. I really benefitted from that. I have Moderate Sleep Apnea and Restless Legs Syndrome. Who knows which conditions came first, but at least I'm getting treatment, and I can still enjoy my life and work part time.
When I got my diagnoses, I could only walk a half of a block before my legs were in such pain, I thought I'd fall. Some good physical Therapy prescribed by the Rheumatoligist along with the right meds, made such a difference.
Do you kick your legs in your sleep and wake up a lot? If so, you should mention that to your docs.
Whatever you do, I wish you less pain, more joy and better health.
Coopwall