Bloodwork came back negative
Posted , 31 users are following.
My doctor did bloodwork to check me for Sjogren's and of course it came back negative. I am so upset because I have every symptom of it. I just knew they were going to call & tell me they finally figured out what is wrong with me. What can I do if I have all the symptoms but bloodwork comes back negative for it? My husband thinks I should just suck it up & that I am just lazy when I need to take a nap. I know he thinks I'm a hypochondriac. I just want to get a diagnosis and be able to try to treat the condition and finally be able to know what is wrong, and be able to show my husband there's a reason for everything. I don't know where to go or what to do from here. Are there doctors that will treat the symptoms of SS or do they have to have a positive blood test?
2 likes, 85 replies
SjoDry susan0217
Posted
Also, there are patients (like myself) who have immune deficiencies and cannot produce the antibodies that doctors look for to diagnose. Hopefully, you can find a doctor who will treat your symptoms.
Good Luck!
SjoDry
millie1202 SjoDry
Posted
Hi SjoDry,
Im interested in more info on your support group. I've been trying to figure out what's wrong. I been having so many symptoms since 6 months ago that started with sudden racing heart, dizziness, shortness of breath and chest pain. Have done all sorts of bloodwork and tests, and just today my bloodwork came back positive with 1.8 for SS-B, (negative is less than 1). Everything else negative
(SSA, ANA). My rheumy says it's very mild SS but my symptoms are anything but mild. They also seem to flare up when im about to have my period. Have you heard of a false positive? Is it common for ppl with SS having sudden symptoms like mine when it starts? Im considering going for a 2nd opinion. Btw, Im 47 and perimenopause was/is a contender and checks off a lot of my symptoms as well. Id appreciate any info. Thanks so much.
SjoDry millie1202
Posted
Hi Millie.
Our support group (SIP ~ Sjoggies In Pittsburgh) meets quarterly. We have an upcoming meeting, but no date yet. Our speaker will be a doctor who has developed a medicine for SS & wants to tell the group about it.
What I have learned about SS is that the journey is different for everyone. For some it is mild, for others more involved (no matter whether you test positive or negative). The symptoms can develop quickly & also play hide-n-seek. One day you have A, B & C symptoms, and the next you have D, E & F. They can come & go and change in intensity levels.
Where are you located Millie? Here's one bit of advice I give to lots of people: Check the Sjogren's Syndrome Foundation site. Look at the connections tab & see if there are support groups near you. Typically, the leader of the group near you will have suggestions about doctors or dentists. I keep a list in my area, because the Sjogren's Foundation refers patients to me, as does my Rheumy. Since you asked about my group, are you near Pittsburgh? If so, please provide me with all of your contact info: Full name, address, phone & email address. I can add you to our database & be sure to invite you to our next meeting.
Take care. This journey takes a lot of patience & support.
SjjoDry (Sandy)
millie1202 SjoDry
Posted
Hi Sandy,
Thanks so much for the info. Exactly what Im going through. For me it feels more like flares but nothing entirely goes away. It's like being sick all the time. Pretty frustrating. I will check out the Foundation page. Im in NY actually, hopefully there's one here. Again, thanks for your advice. Really really appreciate it!
aitarg35939 SjoDry
Posted
Well, we all want to know about that doctor & what he's developed, how much t works, and, of course, where it stands in the lengthy FDA process. Please keep p us posted.
tj268 susan0217
Posted
Hello Susan, I had 3 positive blood test results and my rheumy says they are false positives but my neuro knew I had it before the blood tests and says the tests are ALL corect. Surgeon says I have it too and was the most likely cause of my posterior nose bleed from being so dry. Like all medical conditions you have to go by your gut at times. Many dr's are gonna give you different opinions. Find a dr you are comfortable with. As far as your hubby, not my business , but..sorry he doesn;t understand your illness
I really hope that changes. Best to you 
jennifer09136 susan0217
Posted
Susan I can hear your frustration, and often we need to be able to name something before we can move on. You could change doctors, insist on more tests etc, but in the meantime I suggest you treat the symptoms you have. For many of us "treating SS" means alleviating the symptoms - eye drops, lozenges, a range of dry-mouth toothpastes and mouth products, find and see a sympathetic dentist very regularly (Up to 4 times per year), yoga/swimming/tai chi.....whichever exercise you find most supportive and relaxing, rest as needed, if you have RA symptoms you might benefit from physio/massage............others could add to the list of steps you can take to alleviate symptoms, none of which require a diagnosis, a doctor, or are in any way harmful to your overall health. It is very helpful if you can "relax into" this way of life. My husband is very supportive, but doesnt need to hear about every ache and decision. Most of what I do to treat my symptoms are just part of my dressing/bathroom for the day and I do not draw attention to any of it. You can keep hitting the brick wall or make a conscious decision to take as much of your health as possible into your own hands. Pursue the medical until you are satisfied, but in the meantime do as much as you can for yourself. Best wishes.
Tumtum1963 jennifer09136
Posted
I agree wholeheartedly with most of this. But I think what Susan is actually complaining of most is the fatigue. And without a name it's harder to self manage or pace as much as the disease often requires us to. I have a friend who is so badly afflicted by fatigue that her husband has virtually taken on a full time caring role. So what works for you and I may not work if a partner is calling it laziness.
aitarg35939 Tumtum1963
Posted
Good point, Tumtum. For all my ex's faults, he never doubted my pain or called me lazy.
monkeytoe susan0217
Posted
deidra40034 susan0217
Posted
Oh Susan honey, #1 you need to see a Rheumatologist ASAP! #2 Sjogrens does NOT always show up in blood work, it can take years to show up!! We can suffer for a very long time without diagnosis!! Please don't give up, go now and find a good doctor that knows and understands Sjogrens!!! Being tired can all be part of it, there are days we can hardly move, so tell your husband to read up on it, and be patient with you!!!!!! You are NOT a hypochondriac!!!! Sjogrens mimics so many other auto immune diseases, it is so very difficult to diagnose. You could likely have another auto immune issues along with it...like RA, Raynauds or even Lupus, or something else. I know, it's crazy...but don't you feel crazy!!!! You are not!!! There are meds they can give you, depending how severe, or far along you are. One is plaquinel, another is imuran, and of course prednisone. imuran and prednisone are what is helping me at the moment, but my Sjogrens has gone inside to my organs, this does not happen to everyone however, so I am on a slew of other meds for my organs to continue to function. Some people are lucky, and only have dry eyes and mouth. You also should be seen by a dentist twice a year if you have dry mouth, as we can lose our teeth, dry mouth causes bacteria, which causes us to lose our teeth, so floss as often as you can! Also if you go on meds, you will need to be seen by an opthamologist, as you will need your eyes checked every 3 months due to the meds, those meds can cause eye issues in SOME people. But right now, the most important thing is to find a really good RA doctor as soon as possible! I wish you good luck, and please let us know how you are doing, and remember we are here for you to talk to any time! Feel free to email me or anyone if you want to talk. God Bless!
susan0217 deidra40034
Posted
Thank you for the encouragement! I AM going to see a Rheumatologist. I am going to see if I can find one that really knows SS.
Fatigue & dry eyes are 2 of the main things I deal with but one other things I read about are mouth sores. Mine started with a place on the inside of my cheek. Neither the dentist nor the oral surgeon knew what caused it. It started with like an ulcer I think and it just kept getting worse to the point it was kind of like a cut that would not close up and just kept opening up. The first oral surgery I had on the spot the surgeon biopsied it but I think just for cancer. A year later I had surgery on it again because it came back. I now have times when my mouth hurts like I have ulcers all in my mouth and the area of the surgery will have "flare ups". (I am having one now). I notice that it seems like when I am really tired, or stressed I have these flare ups. I have always thought it seemed like an autoimmune thing but did not know exactly what. That surgeon even sent me to see the surgeon that was over the students at the college here that is for oral surgery. He was supposed be the top person that I could see and even he couldn't tell me what it was, what caused it or what to do for it. That along with my fatigue, (I take a nap in my car on my lunch alot of days), dry eyes & blurry vision, joint pain, soreness in my body, sore and scratchy throat, swallowing problems and getting choked,....etc. etc., makes me feel surely I suffer from SS.
Also, are you familiar with SS and Endometriosis? I just saw that they can be related. I do have Endo & even had to have a hysterectomy due to a large cyst (it was an Endometrioma) on my right ovary.
I really appreciate being able to talk to y'all about all this. I don't know if anyone can suggest a good Rheumatologist that knows SS in Houston or not but if so I would appreciate some suggestions. Thanks again!
susan0217
Posted
Oh yeah, things do not seem to taste right also I have gained weight !
deidra40034 susan0217
Posted
Hi Susan, both my mom and I have issues with our mouth. My mom has Lupus, and has mouth sores, and awful tongue issues. I get sores on the sides of my tongue. Mom has all but lost her taste. I had endometriosis very bad when I was young. I had a partial hysterectomy at 24, they saved as much as they could at the time, but then at 33 it came back with a revenge, and had to have a complete hyst. My Mom had it when she was younger, and lost one tube and ovary. I now have both SS, and Lupus. My RA doc said a lot of times, if you have one, SS and or Lupus, you can have the other, as well as other auto immune issues. Also, the lip biopsy does not always show one way or the other either. My doc is not fond of the procedure because of that. My mom's Lupus was first found by her dermatologist, as it started when her hair started falling out, so it was more topical, then went inside. The mouth sores are because your mouth is dry, and your dentist should have figured that out. My dentist is very familiar with SS, so he really talked to me about flossing, and what to use. He calls me his flossing queen. LOL I am terrified of losing my teeth, and this is very common, so I really take good care of them, and see him regularly, and so far he says I'm in great shape. You need to get on some meds to help you with the joint pain, and fatigue. I know some people say diet works for them, it did not work for me, but you do what is right for you. I couldn't function, so I went with the meds, and am feeling much better now. But, like I said, my organs are involved now, so I have to be on more meds. I waited too long, trying the diets, and got myself in trouble. I went into kidney failure, it has taken about a year for my doctors to get me stable. I do get flare ups, but still better! I really do wish you luck!!! Hang in there!!
aitarg35939 susan0217
Posted
Hi Susan
Was planning to come on just to suggest acupuncture for fatigue (they always ask how is your energy so say that you need more), only to see your question about SS & endo! I have both, total hysterectomy @ 27 and 27 years laterit came back & cost me a piece of colon. If it comes back in another 27, I don't plan on being around lol.