Really New and Really Confused

[Fulham205]

Hi All,

I seem to be starting out on all of this and it's all rather confusing.

All started 3 weeks ago with a pain in my right arm, anyway long story short spent a week in hospital with pleurisy, they did some blood test and i had a positive ANA 1:320, i did follow up ANA and ENA and came back with the following:

ANA 1:1280
ENA Positive SS-A and SS-B
Rheumatoid Factor was 128

I saw a Dr and he proudly annouced it was an autoimmune disease but would not say much else. Now from reading on here and other message boards i guess it seems that Sjogrens is most likely due to the blood work but truth is i do not have any dry eyes or dry mouth, plus i am a guy which i know does not rule me out but makes it a litle less likely.

I do feel strong fatigue thats comes in waves but i am not sure if that is just down to Pleurisy or a symptom that something else is starting to happen. I have an appointment with another dr in a weeks time and i was wondering, without the dryness symptoms is he likely to say its something else or with the recent blood results is the case so strong for Sjogrens that he is likely to say its that.

I keep trying to resist the urge to redo the blood tests again, i dont know why but cant help but think this is all some big mistake

any words of wisdom would be greatfully received.

[Joe S.]

Welcome to the forum. There are a number of men here. I have multiple AI diseases. It may take several Dr and lots of frustration to get diagnosed. Do not get upset. Write down all of your questions, symptoms and other issues that you have. Take an advocate with you to every Dr visit.

[Fulham205]

Thanks Joe,

I didnt mean anything by the guy comment just saw some figures that suggested its a little less likely, it really doesnt matter seeing that clearly everyone is trying to find their way through all this.

I guess i am confused becuase i thought i would have the dryness issues first before jumping into something like pleurisy, just seems strange but then what the heck do i know 

[DragonflyC]

Fulham, I had pleurisy in 2003 and 2004, but dryness didn't become a problem for me until 2008.

You are lucky that your doctor looked further.  Mine just said, "Oh, you have pleurisy," like that was a normal thing for a 27 year old woman.  I know better now and feel like I could have avoided a lot of suffering if someone had given my condition any thought back then. 

As for your blood tests, AI diseases are slipperly things.  You may actually be better off with a doctor who is more interested in symptoms than labels. 

Essentially, most people w/ AI diseases eventually have more than one.  Often the diagnoses change throughout the years, too.  My blood tests are much like yours and my symptoms are even more specific for Sjogren's at this point, but when talking to me about my illness my rheum will only say, "With Sjogren's, which is what it looks like you have . . ." not that I definitely have it. 

Are you being treated in any way?  Did your doctor prescribe meds for your AI condition, or is he/she just treating your pleurisy at this point?  A lot of us find some relief from our fatigue from plaquenil (eventually) or from a short course of a low dose of prednisone.

[Fulham205]

Hi DragonflyC

Thanks for taking the time to post to me.

Yes they have started me on Plaquenil, i am such a new baby to all this i only took my second pill this morning hahahahahaha so i really am taking my first babysteps i am a bit daunted by what i have read so far but its nice to see there are people out there who have been there and done it all.

I assume that with SS-A and SS-B its much more likely that i am now playing for team Sjogrens rather than any other, sometimes i cant help but think the fatigue is all in my head, you know what i mean, it comes and goes its just so weird

[Babs659]

Welcome to "Team Sjogren's"!  I like that

[Carolina]

Ahh, Fulham,

The 'guy thing' is true. 

And in a way the fact that Sjogren's sufferers have historically been predominantly older women, means that the condition has been IGNORED and MINIMIZED for years by the medical profession.

Sjogren's is the SECOND MOST PREVALENT AUTO IMMUNE DISEASE after Rheumatoid Arthritis.   It is more common than Lupus!

50-75% of Sjogren's sufferers have profound fatigue, pain, and depression.   

Interstitial Cystitis occurs in up to 28% of patients with Sjogren's and is in itself an Auto Immune Disease.

And YET my last Rheumatologist did NOT KNOW THIS!

Many women have IC, as well as Sjogren's, and don't realize it, because they are older and they think well it's all just falling apart!

While we are all on the down hill run practically from birth, IC is NOT part of that process.  It is another AI.

Peripheral Neuropathy is very prevalent in  Sjogren's syndrome.  and YET my last Rheumatologist did NOT KNOW THIS.

Here is what a world famous Dr. Birnbaum has to say:

"Although I had anticipated that the bulk of my patients would have lupus, we are seeing a wide spectrum of patients with neurological complications of Sjogren's disease. Patients with neurologic complications of Sjogren's are often marginalized and dismissed by the medical profession, due to general unfamiliarity with the types of unique neurological challenges faced by patients with Sjogren's. Conditions which we manage include complaints of burning feet, problems with "autonomic nervous system", vasculitis, muscle problems. We especially focus on patients who are often misdiagnosed with multiple sclerosis, who may have inflammation affecting the spinal cord and the nerves connecting the eye and the brain. "

It is my belief that most of this ignorance stems from the fact that the complaints of older women are often dismissed, even by the older women themselves!

When I was a teenager, menstrual pain was attributed to a young women REJECTING HER FEMININITY.   Could anything have been more degrading, dismissive and plain WRONG?

I'm sorry you have this difficult condition, but I hope that the more varied the population affected, the more attention Sjogren's will finally receive.

And on the personal side, THIS is the place where you will get information and support up to the level that you need.

Welcome to our 'honorable team'.

Keep us posted.

Kisses

Carolina

[Fulham205]

Well i can understand why anyone would feel minimised if having even an AI can be something that is stereotyped

My wife and i are so new and confused right now i wouldnt care if it was little green men with two heads that shared what we are going through so rock on team Sjogren is all we can say, nobody deserves to be ignored in a situation like this.

And oh my god where i would be if it wasnt for my wife, a big shout out to all your family members that i am sure have stepped up and helped you with all of this, she is my rock and my strength, i am surprised that more message board posts dont mention the spouses, family and friends i can already see there is no way i could deal with all this without her and we are only about 14 days and counting with some weired blood work results, god only knows where this is going to end up.

[bjnc]

Be sure to find a rheumatologist that you're really pleased with.  Don't settle for one who doesn't seem knowledgeable enough about Sjogren's or doesn't seem to care or rushes you in and out quickly.  Look for one who you trust and have confidence in.  This will make a world of difference in how you handle things physically and emotionally.

And the fatigue is sometimes terrible, and it's not in your head.  But it does vary from week to week in its severity.  Some days are good and some not so good.  But hang in there.

Becky

[Fulham205]

Hi Becky,

the fatigue is just weird i mean its not like being tired its something different, heavier, i keep trying to tell myself its just my mind playing tricks on me but i guess if the pluerisy was a, what seems to be called, Flare - then maybe thats why i started feeling like this.

i even keep looking at the paper with the blood results on and keep thinking naahh it must be some mistake.

i guess you all went through this in some form

[DragonflyC]

Fulham, I completely understand what you mean about thinking symptoms are in your head.  I constantly doubt and second guess myself ("Am I really that tired?  Does it really hurt that bad?").  For me, it's partly that I'm a tough cookie--I push myself far beyond where I should b/c I have no sense of when to stop--and it's partly denial.  Even after several years, I can't quite wrap my head around the idea that I'm sick. 

I also hear you about having a great spouse.  My husband is the only thing that keeps my stubborn desire to do everything in check by reminding me, with love, that I should feel OK about taking it easy and that no one expects me to do everything. 

[Scottietottie]

Hi Fulham 

Welcome to Sjogren's world. Sjogren's is a very unpredictable disease and the dryness does not necessarily show up first. If SjS IS the dx you get - you are lucky to have been caught early as there are DMARDs like Plaquenil that can slow the progression of the disease (if needed) and you will be monitored.

Please don't get scared by what you read in here. SjS can make some people really ill - but like I say - its unpredictable. Others - like me - are not ill - just uncomfortable but I've had it for at least twenty years if not longer. I've brought up a family and am still working.

I hope you find the site useful.

Take care - Scottie 

[Sweetgirl]

Fulham,

Hi and welcome.  Your right we are a great team, some one will always be there for any question, rant you may want to post.  I know it's hard but, don't second guess yourself too much, it uses up too much energy!  And don't let any doctor tell you your symptoms are just STRESS. Oh, if I had a nickel everytime I heard that one........  Anyway, I hear you on the support of a spouse, or loved one.

Just yesterday I was reading how some people have been misdiagnosed with MS, and it turned out that they had Sjogren's.  I looked at my husband and said, "Well, honey I either have Sjogren's, Fibro, or MS".  He hugged me and said "I will be with you no matter what you have, or don't have."  Gosh, I love that man!

Keep looking for answers, but allow yourself to be you, not this illness.  I am still learning how to do that.  The trick is not to beat yourself up when you have a bad day, or days, and allow yourself to laugh (best medicine out there) and be light on good ones.

Good luck to you and keep in touch.  

Kristine  

[Julie]

Fulham,

I would not be 100% accepting of the diagnosis given to you based on one set of labs. I think that those results can cross over into a number of different diseases or syndromes.  Also, pleurisy can happen to anyone for a number of reasons.  I would get a couple of opinions and see a few other specialists.  It is very difficult to find a doctor that is both knowledgeable and experienced in treating people with Sjogrens, AND one that listens and has a good bed-side manner.  Be your own advocate and don't settle for what just one doctor says.  I've experienced first hand how 3 different specialists within 2 days each came up with a different conclusion as to what was wrong with me.  It gets tough to know what to believe, but we have to remember that doctors are merely human...AND they are, after all, called practitioners.

Good luck in seeking out the answers.  I hope you feel better soon!

Take care
Julie 

     

[bjnc]

As far as the fatigue, I have found that it's worse just after I have been through a very busy time.  it just hits me like a brick wall.  Then I have to rest as much as possible to get back to a manageable level of fatigue.  So if you can do anything to adjust your schedule (easier said than done, I know), so that you don't push yourself too hard, then that will probably help your fatigue to be less severe.

Becky