How long to get diagnosed with Sjogrens these past 5-8 years

[meirish]

I'm starting this post because I am curious as to how long it takes for people to get diagnosed with Sjogrens or any other autoimmune diseases in recent years. I started having symptoms in middle 1960's ( I am now 80 years old) I doctored for so many years and had one physical symptom after another. Since I was a Registered nurse the doctors seemed to have it in their head that I was coming up with all these symptoms I had seen in my patients and also was seeking attention with this behavior.

I was not seeking attention and I really did have all these symptoms, pain was one symptom and chronic fatigue that was very unusual and hard to explain. One thing that turned out was against me was the fact that I have a high pain tolerance and can put up with all the symptoms and still manage to work and get my work at home done. That is not to say that I got my house cleaned good, but it was liveable.


Anyway, it took until 2002 to get diagnosed with Bullous Pemphigoid which is a skin autoimmune disease. Now that I think back I wonder why this didn't trigger more doctors to check me for other autoimmune disease. After all, the theory is if you have one autoimmune disease you could have another. I did get diagnosed with Sjogrens in 2003 and that was purely by accident -- my doctor didn't think I had it--no way he said. Was he surprised!! Later down the road I had other issues that caused a doctor to send me to an immunologist and I was diagnosed with 2 other autoimmune diseases plus severely low t-cells, The autoimmune hearing loss was also diagnosed many years later.

Now, this was almost 40 years for me to get diagnosed. I was on IVIG for 16 years for my Myasthenia gravis diagnosed in 2006 and missed by big specialist 5 years before in spite of so many symptoms and one positive blood test. So many people on this site have had symptoms for many years prior to diagnosis but it has seemed lately that people are not talking of waiting so many years before positive testing and diagnosis.

This makes me wonder if people are not going to the doctor as soon due to extenuating circumstances or possibly doctors are diagnosing sooner and there are less complaints about length of time to diagnosis. Very possibly the testing is more advanced these days thus earlier diagnosis.

I would appreciate hearing about any new testing that is being done and if the wait times are shorter for diagnosis now. Possibly the doctors are giving more IV drugs (besides IVIG} that are helping people be more comfortable with Sjogrens and other autoimmune diseases they may have. Thanks for listening.  meirish

[Nomad]

Sometimes I think if you suggest to a doctor you might have something, that could be the kiss of death.It could end up ignored.  Even if you are a nurse!

I was lucky as in the city in which I lived previously, I had a rheumatologist very familiar with autoimmune illnesses. I had seen him a lot for lupus. When my lupus went into remission, I rarely went to see him. BUT, then I started noticing some slightly similar symptoms to lupus plus (at least at the time) slightly dry mouth and eyes. He took a blood test and it came back positive for Sjogrens. For me it was a fast and clear cut dx. Never heard of it previously in my life.

As a side note, it remained somewhat subtle in symptoms for 10-12 years. Recent times...much more difficult.

[meirish]

Nomad, You are right about mentioning something to a doctor when one is a nurse being the kiss of death. It always makes me think that those doctors that act that way are basically snobs. AFter all, when we have been ill for years, and many times decades, a doctor should know that most patients do a some googling and are going to wonder at times about the possibility of certain diseases.

THe fact is we are desparate to find out what is making us feel so sick...it's not like we are hoping that we have some far out disease to brag about. It always makes me think that if their wife was sick like we are what would they would do. They would raise heaven and earth bugging all their doctor friends for answers...that's what. Patients are a lot more informed than they used to be with the internet.

Sorry that your Sjogrens had to increase in intensity. We sure never know what these autoimmune disease will do. Take care. meirish

[twiggy]

I first started having obvious health issues back around 1980, when I was 20 years old. I had lower abdominal pain after eating, but it only happened every few weeks so I didn't pay much attention to it. I also was overseas in the military at the time, so there could have been any number of reasons it developed then. However it continued to become much more frequent and quite painful. The military doctors just saw it as a reason to not keep me around. I was young and I didn't want to ruin any future career options due to a medical release, so I stayed in the military just long enough to get my 4 year honorable discharge.

By around 2001, the pain (abdominal spasms) became so painful after eating, that I would black out and get concussions. My GI doctor said everything about it sounded like Crohn's Disease, but the EGD/colonoscopy came back negative. Every other doctor I saw always told me that it's just stress and IBS. I suffered many years knowing that something was very wrong, but no idea what it was. I learned through trial and error that I could not eat about 90% of what the average person eats. I lost a lot of weight and became very weak.

Then in 2013 I was seen by a new doctor. I was fortunate enough that this doctor decided to do an autoimmune panel and it came back positive for Sjogren's. At the time I was not having anything like dry eye or dry mouth yet , just a very aggressive form of IBS-D. However, during the next few years things went downhill pretty quick and I was then diagnosed with Gastroparesis, Hiatal Hernia, Bronchiectasis, Osteoporosis, Arthritis... the list goes on. I still continue to test positive for Sjogren's. My main issue still remains to be the aggressive IBS for over 40 years now. I can only assume it's when Sjogren's first started since IBS can be a common problem. I still am not able to gain weight (hence the name twiggy).

I think my diagnosis took a long time simply because I didn't really show what was considered an obvious sign of any autoimmune disease at the time.

[Linda196]

I must admit I was vary lucky in my diagnostic journey, which started over 50 years ago.At that time I was diagnosed with and treatment started for, Thyroid cancer. Bearing in mind that we had no advanced imaging, and lab work was much less sophisticated, I had a thyroidectomy, complete with "tumors" which were diagnosed after several examinations in different labs due to inconclusive results, as Hashimoto's thyroiditis. Diagnosed within 3 weeks of the discovery of the goiter with no signs of malignancy.

About 5 years later, severe joint pain led to a quick diagnosis of polyarthralgia, based in part on the existing autoimmune diagnosis.

And so it followed, another 5 or so years, symptoms of non-Hogkins lymphoma led to an actual Dx of Sarcoidosis, because by then my rheumatologist knew to look for autoimmune as well as the obvious, I was actually only the second person he had diagnosed with sarcoid, in his 30 year practice.. Costochondritis was next, diagnosed within hours in ER, then Sjogren's, suggested at the first rheumy visit, but not officially diagnosed until all labs (including biopsy) were confirmed, about 6 weeks.

Since that time (nearly 20 years ago) there have been diagnoses of diverticulitis, polymyalgia rheumatica, enthesitis, chronic tendonitis, and probably something I'm forgetting, and all completed fairly quickly because of my history and my tendency to produce large numbers of antibodies.

Currently, I am dealing with delays and problems in getting a diagnosis of my current symptoms. Taking into consideration the delays caused by the pandemic restrictions, and the fact that my symptoms and labs don't fit any one disease process but are "strongly suggestive" of three different things, I think I can understand the problem. Two of the three possibilities are treated with the same regime I'm currently taking, in larger doses, so I don't feel like I'm being ignored, I am getting some treatment. The problem is the third possibility which may worsen with larger doses of what I take now, so it's a tightrope walk.

I think this saying was devised specifically for autoimmune people:"May you live in interesting times". It is an English expression that is claimed to be a translation of a traditional Chinese curse. While seemingly a blessing, the expression is normally used ironically; life is better in "uninteresting times" of peace and tranquility than in "interesting" ones, which are usually times of trouble.

[Scottietottie]

Hi 

I think mine started back in my 30s but I didn't get dxd till my mid 50s. I got tendinitis and neurological symptoms way before the dryness struck. The dryness struck round about menopause.

Take care - Scottie 

[meirish]

This has been so interesting. Thank you all for replying to this post.

Twiggy, it sure sounds like you started out with a bang with the IBS and some gastroparesis. No dryness to speak of at that time but many other issues kicked in.

LInda, You started out with a bang also...the Hashimotos and other complicated issues and then down the road the Sjogrens. I didn't hear anything about dryness from you either at the beginning.

Scottie, And here you come with other issues first but no dryness at that time. The neurological issues are often right up at the start with people as I have noticed on this site through the years.

It really is interesting to hear how people get diagnosed and how long it takes. Sometimes, I don't think it depends so much on the testing as it does on the doctor's ability to be aware of symptoms. I have always said if the doc can't pin few names on symptoms in a reasonable amount of time it makes sense to do the autoimmune blood work. Thanks again and have a good week. meirish

[susanep]

My first Rheumatologist diagnosed me with sjogrens, but after I had seen him for 5 years and sick, he told me it was just ashamed when I could no longer work. He then said he could not see me. I then went to the one I am seeing now, and he took lots of blood, and diagnosed me with lupus on first visit. He is good to catch things.

I had a radical hysterectomy in 2021 due to having cancer, but fortunately it was a stage one. I just have an to go for check ups.

Me an my husband got the covid virus last year before Christmas. We did ok.

I have to have some x-rays done on my back and left hand. Then an MRI.
I have Rheumatoid Arthritus.

I also have an appointment to see a Cardiologist after an electrocardiogram showed something abnormal.

I haven't been on here in awhile due to all this, and have felt depressed due to feeling like I can't do anything.

I have a strong faith, but I do wish I had others to see..

My husband seems much slower too in everything.

I keep everyone here in my prayers, and I am thankful I can do that.

susanep

[confused]

I hit the blood work that showed sjogrens around 2008.  I still run into doctors who have no knowledge of sjogrens and the pain it can bring.
It is a disease that truly not much truth is written about and Big Pharma doesn't see it as a money maker so don't expect a real cure until they really are working with the genes to see which do what.  I suspect sjogrens will catch a cure when a scientist is looking for something else.
And wouldn't you know that it would be a family doctor who has practiced a grand total of about 4 years that knows more about sjogrens than anyone else I have seen?  It is a strange world.

[meirish]

So interesting to hear everyone's stories. Confused, you are probably right about someone stumbling upon a cure for Sjogrens Syndrome accidently. That is what happens a lot of times. Better this way then never though. Take care everyone and have a good weekend. meirish

[Carebear]

I recall the pain, cognitive impairment, dry eyes and fatigue hitting me hard when I was 41 years old.

I tried seeking medical answers but I was always told it was depression. I went on antidepressants for several years but they only added to the negative symptoms.

I can't necessarily blame my doctors completely because my symptoms were all over the place. That was still in the 90s so I don't even think I of googling this.

I struggled for another 14 years or so when I finally announced to my family doctor that I couldn't work any longer. That's when I was finally taken seriously and the genuine investigation began.

It was another year before Sjogren's was identified. So I guess I suffered for 15 years undiagnosed.

[meirish]

So far it seems that people replying are probably under the age of 40 years old. It would be interesting to have some younger diagnosed people reply. I am still curious as to how well the doctors are listening to people with all these symptoms plus how long it takes to get diagnosed.

The above replies doo point out that dryness is not always one of the first health issues.
Just can never tell with any autoimmune disease. Thank you all. meirish

[meirish]

gfds

[meirish]

 Will try again and see what happens. Folks I have not been up to par for about 3 or more months. Lots of weird stuff going on. Didn't post for long periods of time and then would have trouble getting on the forum. I have having a lot of problems with my hands also...hardly able to type and fingers have little feeling besides not moving the best.

I will just piddle around the site some and see if I can make everything work. Thanks. meirish

[TTSandy]

So sorry to hear that you're having these health problems as well as tech issues.  Computer problems can be so frustrating and certainly stressful which is something we don't need. Always look forward to your insightful knowledge and helpful comments on this forum. Sending prayers.

Sandy