Author Topic: Diagnosis when seronegative  (Read 722 times)

Chelsea

  • Newbie
  • *
  • Posts: 3
Diagnosis when seronegative
« on: December 19, 2021, 03:07:50 PM »
Hi everyone,

I've had Sjogrens symptoms for 3 years but nothing shows up in my bloods. My schirmers score was zero and have neuropathy, reflux, reynaulds, bodywide sicca and now my finger joints and tendons have all swelled up alongside widespread joint problems.

I could ask for a lip biopsy but I don't think many are done here - I'm in Edinburgh, Scotland - and I don't know if scans are done here. Does anyone know what the most reliable diagnostic test is for those who are seronegative so I have an idea what to push for?

Any thoughts most welcome,
Chelsea

meirish

  • Sr. Member
  • ****
  • Posts: 430
Re: Diagnosis when seronegative
« Reply #1 on: December 19, 2021, 10:39:11 PM »
I have been sitting here and thinking about what you are saying. Seronegative is such a strange "land" to be in, isn't it? I was there for many years but with different symptoms. The first thing that will cause you some questions from doctors is that you don't mention dryness as a symptom. I had some dryness in my mouth that was enough to cause me huge tooth issues that resulted in the loss of my teeth. However, I did not get dry eyes until after being ill for years and then about after I got my positive lip biopsy my eyes started to get dry. Autoimmune diseases are so fickle and hard to diagnose. I can believe that you have sjogrens but I am wondering if you have seen an immunologist who specializes in autoimmune and immune issues more than the allergy angle.

There are so many other autoimmune diseases that can cause many of the issues that you have. Not having dryness as a  resounding issue causes me to wonder if any of your doctors have investigated the many other AID. I am somewhat familiar with Scotland as my granddaughter spent about 2 weeks there with a work study group from college and was really impressed with the university there. She and I talked a lot about your country. My first thought is if you have considered getting in touch with anyone at the University and seeing if there is a specialist that is really into sjogrens or other autoimmune diseases>

Also, if you can find someone to visit with at the college you might want to check to see if there are any research or any kind of studies going on that night taking you in to assess your condition and maybe find some treatments that would help you be more comfortable even with out a diagnosis. It took me so many years to get diagnosed and I was so frustrated about what I had to go through to finally get some help. Most of us don't look sick but if they only knew how badly we feel and how it wears us out just getting through the day sometimes hour by hour.

I am also wondering if you have had any doctor who would consider putting you on Plaguenil or hydroxychloroquin for help with your inflammation, pain and fatigue. I know it is hard to get on that med with all the publicity that ties it to Covid, but it does help and is the first med of choice for Sjogrens and Lupus. Also, rheumatoid arthritis patients are put on this med a whole lot. It sets off alarms so often with doctors and others because of the presumed eye problems that can develop. I have been on it for more than 10 or 12 years and it does help. It doesn't curse a person but I have had to go off this drug for a few months and thought I couldn't tell the difference until my blood level of the med had gone down and then the aching, pain and fatigue came back. it helped my joints. Also,I have bad tendons also and I would think it would help calm that inflammation for you.

My daughter in law is an optometrist and has been acutely interested in Sjogrens and Plaquenil since she had been treating my eyes since 2005 with Restasis and following my eyes yearly with all the tests needed to watch for eye damage from this med or any meds that i am on plus I am diabetic. I am closing and starting another post so I don't have to shorten this one due to too many characters. meirish


meirish

  • Sr. Member
  • ****
  • Posts: 430
Re: Diagnosis when seronegative
« Reply #2 on: December 19, 2021, 10:59:46 PM »
Chelsa....Page 2

My DIL says that she goes to state wide seminars about Plaquenil and plus state conventions that address the subject of this med and its safety profile. It is an anti parasitic drug that has been given for decades for malaria with good results. When patients with RA or Lupus or those having other autoimmune diseases had to take hydroxychloroquin for malaria they would notice that their symptoms of their autoimmune diseases would improve and they felt better. Over the years the doctors learned to lower the dosages of this med considerably in order to give the lowest dosages possible to still increase the autoimmune patients comfort.

They also found that with the lower dosages there were much fewer cases of eye issues. The main thing is to have a very good eye exam before you start the drug and probably in 6 months or so per your eye doc and then yearly exams are usually enough One thing that they want checked is the vision field test and I usually have a retina scan. There are a couple other tests they do also but it really is good way to keep up with your eye health. Usually people choose to go to an ophalmologist but I do well with my DIL as she is very good at her profession plus has gotten more education in this area. The one thing she did mention is that some doctors are not trained as well as they could be in identifying the eye conditions that can result rarely from this drug. I guess it has symptoms that are close to another eye issue.

Also, sometimes doctors can put people on steroids at a fairly low dose for a reasonable length of time that would help them know if what you have is inflammatory in nature and responds to the steroids. I have been on steroids for many years at low dosage for my myasthenia gravis and have fortunately had few side effects. I developed diabetes and cataracts but both run in my family and my sister got these both long before I did and she doesn't take steroids. I am a type 2 diabetic under control with a medication and diet plus exercise or walking when I can do it. I had my cataracts repaired this winter and I am 78 years old so I guess I was due for that.

You will have to pursue this diagnosis because doctors are so darned busy and don't always think outside the box...so we have to think that way and do the thinking and searching. Research on line any and every way you can. Be careful to sort out what you read and think is true as there is a lot of junk stuff on line. Do the universities in states and countries plus Johns Hopkins who has a big sjogrens section. Cleveland clinic has a lot of info on Sjogrens also. I hope some of this is helpful. Don't give up hope and hang in there. Don't wear yourself out pushing forward on this as stress isn't good for autoimmune disease. Take care of yourself and good luck. Come back to our site when you have time. meirish

Chelsea

  • Newbie
  • *
  • Posts: 3
Re: Diagnosis when seronegative
« Reply #3 on: December 20, 2021, 02:41:38 PM »
Thanks so much for responding meirish, it's very much appreciated. Yes, I'd like to at least try plaquenil. That's great it's helped you with your tendons and other symptoms. Problem is I don't even have inflammatory markers so I don't think I would get it. There's little awareness of Sjogrens in Edinburgh and I'm not sure how often lip biopsies are done. Also my mouth is dry but nowhere near as dry as my eyes so I'm not sure it would even show up in a lip biopsy.

I have no tear production and body-wide dryness which is why it seems like Sjogrens. I was okay managing it myself until I got the joint and tendon problems which are just getting worse and worse, so am finding I can bend my fingers and use my hands less and less. Nothing even showed in ultrasound. I'm cursed! I live alone with no family to help so really need to be able to use my hands. Not least for squeezing the constant eye drops!

Thanks again for your help and hope you're doing as okay as possible,
Chelsea

meirish

  • Sr. Member
  • ****
  • Posts: 430
Re: Diagnosis when seronegative
« Reply #4 on: December 20, 2021, 10:21:25 PM »
Have you seen rheumatologist at all. This doctor might be able to help you with your body aches, etc. It is not uncommon to not always have markers or even a lot of dryness with sjogrens. When I first had my worst symptoms was when I was pregnant with my 3rd child at age 27 or so. I had gastric upset so bad and a very tender gallbladder plus terrible back pain and they had to give me a cortisone shot when I was 6 month pregnant because I could not lay, sleep, sit, stand, etc. I paced a lot night and day.

I didn't even know that I had bad mouth dryness until I started having sos much trouble with my teeth and the dentists never paid any attention to it. It took me almost 40 years to get diagnosed with sjogrens. The symptoms can be so subtle and change from time to time. I had a skin autoimmune disease prior to sjogrens diagnosis and that didn't even tip the docs off that I was an autoimmune patient walking around miserable and undiagnosed.

I have loads of trouble with my hands and lots of neuropathy and tendon issues and am a widow and live alone so I understand  your plight. We have to figure out ways to do things and plan ahead a lot to get things done. If you can get into a rheumatologist that might be one way to maybe get referrals or even some type off medication to help you. These types of doctors deal with arthritis and body issues and you might even find one who would order Plaquenil to see if it would help in spite of not being diagnosed. This type of doc might even find some other issue that he would diagnose that would make you eligible for some meds you never thought possible.

Much of the time we autoimmune patients have to really search around and be aggressive to find care. I know I did and it was really hard at time. Good luck. meirish

Confused

  • Full Member
  • ***
  • Posts: 197
Re: Diagnosis when seronegative
« Reply #5 on: December 21, 2021, 12:41:17 PM »
I hope you get some help.  Best thing is to get a doctor who truly cares about you and does not have an agenda such as be nice to you so you will do this or that.  Am old so am looking for the doctors of another era who actually cared about patients.

Meirish has lots of good info.

I do have the blood work but so what.  I literally have had doctors who think since I am now sero negative I no longer have sjogren's despite having a ton of things that are wrong with me.  Lazy doctors?  Merish is right you generally have to be aggressive to find docs who will help.  Many do not like the fact that I am complicated. 

Keep copies of any tests run and any notes from a daily visit from doctor are good to have though you may not get them over there.  Don't know.  Just try to take an advocate with you if you can. 

best of luck


Chelsea

  • Newbie
  • *
  • Posts: 3
Re: Diagnosis when seronegative
« Reply #6 on: December 22, 2021, 05:04:32 PM »
Thanks for your replies and I'm sorry for all your difficulties. I've seen a rheumatologist and had an ultrasound but it bizarrely showed nothing, even with all the swelling and not being able to bend them. He's saying I could have an MRi but am not sure it would show anything different. I seemed to have RA but if you have similar tendon and joint problems in your hands meirish perhaps it's Sjogrens.
I'll try to get hold of notes as you suggest Confused, and try to persuade the rheumy to give me Plaquenil - it's worth a try.
Thanks both of you, much appreciated,
Chelsea

meirish

  • Sr. Member
  • ****
  • Posts: 430
Re: Diagnosis when seronegative
« Reply #7 on: December 22, 2021, 09:02:21 PM »
Many people have Rheumatoid arthritis and later develop Sjogrens. It might be interesting to pursue the arthritis because much of the treatment for aRA will also help the Sjogrens. Not all...but many of the treatments of RA.

Also, the interesting thing is that tendon issues are found in a whole lot of the autoimmune diseases. Thyroid disease can cause tendon issues My one son has extremely severe Hashimotos and has bad tendons. He jumped out of bed suddenly during the night when the smoke detector went off and ruptured his achilles tendon and missed months of work. Be aware that sjogrens is not always going to be a diagnosis. There are also some other autoimmune issues and other problems that can cause dryness.

I would most certainly pursue the RA or arthritis diagnosis of problems when you have so much hand pain. Have you had your thyroid checked....both your TSH and your TPO to check for low thyroid along with the antibodies that can mean Hashimotos (TPO)

When we do a lot of research we can sometimes get off thinking it is one disease when it isn't. I did that when I first started hunting for a diagnosis Take care, stay calm and keep pursuing. meirish

I did have sjogrens diagnosed in 2003 but I think I was having symptoms since in the 1960's and no one tested for it back then.
« Last Edit: January 06, 2022, 10:11:12 PM by meirish »

Deb 27

  • Hero Member
  • *****
  • Posts: 814
Re: Diagnosis when seronegative
« Reply #8 on: January 05, 2022, 01:44:10 PM »
My first auto immune diagnosis was seronegative RA. It wasn't until several years later that I moved and saw another rheumatologist and she asked me a lot of questions. My blood work was negative for Sjogrens so she ordered a lip biopsy. The ENT that I saw was pretty good. It was sore for several days but healed. I was positive on the lip biopsy, so I am glad that I had it.

Originally, I had sausage like swelling of my fingers and pain in my hands and feet. I responded well to plaquenil and prednisone. They tapered the prednisone and then I just took plaquenil. I also had a weakly positive ANA that went to negative after a year of treatment. My sed rate remains high. I hope they can find out what's wrong and treat you so you feel better!!!!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

meirish

  • Sr. Member
  • ****
  • Posts: 430
Re: Diagnosis when seronegative
« Reply #9 on: January 05, 2022, 08:26:21 PM »
I don't think we have to be terrible dry to have a positive lip biopsy. The secret is to find a good ENT that knows how to do a good lip biopsy. When looking for someone to do the lip biopsy ask if the doctor deals with sjogrens patients much and also ask how often he does lip biopsies. If the receptionist doesn't know the answer to this question ask to speak to the doctors nurse. This is important info to know as doing a couple a year isn't always a good way to get experience. Most doctors need to do these on a fairly routine basis to know how to do them correctly. Often a negative one can result if one doesn't do the biopsy correctly.

Also just to let some of  your know, my positive lip biopsy came before my eyes got so bad and before I had any positive blood markers for Sjogrens. Probably after I had sjogrens for at least 35 years. It really is hard getting the positive blood work as our blood tests can switch bad and forth between negative and positive because that is just the way our blood markers are. All the time we are negative may just mean we got tested at the wrong time. Eventually statistics even out and we will have a positive blood work.

The one thing that has come to my attention over the years is how a person will make the decision to have a lip biopsy. First of all you have to have a doc who will tell you to get one...sometimes people will choose not to as it is discouraging when it comes out negative.  However, I have noted that people will suffer and put up with symptoms and pain etc. and finally they just think...do it. Sort of find out that once we have a diagnosis we are more apt to have treatment to make us more comfortable. Also, having another autoimmune diagnosis first and then having a negative lip biopsy for sjogrens symptoms is disheartening. However, once diagnosed with one autoimmune disease the docs are more apt to treat the symptoms of the ? sjogrens. Autoimmune diseases will run in packs....one, 2,3,4 at a time. Just some info hopefully will help others.

Just like Deb who had a RA diagnosis first. This is quite often accompanied by sjogrens as well as Hashimotos. Everybody stay healthy, safe and warm. meirish

Maria3667

  • Hero Member
  • *****
  • Posts: 846
  • Sicc'a ff it!
Re: Diagnosis when seronegative
« Reply #10 on: January 06, 2022, 12:04:18 AM »
Hi Chelsea,

Despite having all dryness issues, muscle and joint pain, I've been diagnosed as 'sicca non-Sjogren's. Basically it means a dryness syndrome without Sjogren's biomarkers .

To help shed light on this syndrome, I've created a Facebook page called 'World Sicca Syndrome Forum' www.facebook.com/groups/948508912415448/?ref=share. As a support group we help each other with tips & tricks and share experiences. You're welcome to join :).

By the way, I had a (negative) parotid biopsy which they say is less painful than a lip biopsy. My SSA/SSB involvement is also negative. I've been treated with Plaquenil but had to quit due to side effects. But pilocarpine helps stimulate saliva.

Good luck on your journey!
« Last Edit: January 06, 2022, 04:48:39 PM by Maria3667 »
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex