Author Topic: Interested in talking to males with sjogren's syndrome.  (Read 17707 times)

inga

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #30 on: January 25, 2010, 10:44:05 AM »
One more thing....immune systems in men and women are very, very different, or men would not be here.

Women must carry a foreign body and not have their immune system kill it.   It is not unusual to find fetal cells circulating in the mother for decades after delivery, especially male cells.  There is one theory of autoimmunity that states that it is due to microchimerism....or, having foreign DNA in your system. This is somewhat similar to the theory of molecular mimicry, which is that the body gets an infection and that the 'germ' is similar to our own cells, or that the germ actually tricks the body to attack its own cells instead.  I had an acute case of Lyme disease 15 years ago, and it is conceivable that Lyme caused my body to attack my own nervous system, because Lyme or borrellia is known to invade cells of the host.

Another even more profound thing to ponder, is that some drugs structurally change receptors.  Some drugs such as the benzodiazepines alter GABA receptors thru genetic transcription and when you go off these drugs, you have to wait for new cells with new receptors to grow before you feel half way normal.  I wonder if the body could possibly attack the genetically altered binding sites?

ENA tests for about 7 to 10 common antibodies that cause the classic diseases we know as autoimmune, among them SjS.  I don't test + for SSA or SSB, but my salivary glands have lymphocytic infiltration.  If we call sicca, Sjogren's well then I have it, but sicca is the least of my issues.  If we call + salivary gland biopsies, Sjogren's, well then I have it.  If we call SjS a + ANA well, then I have it.  If we call Sjogren's a + SSA or SSB I don't.  SjS and Scleroderma share a gene, SSSScA1..  It is just one gene it shares.  People who have both scleroderma, (which definition of it, I don't know) and who also have SjS, which definition, I am not sure, have less severe scleroderma if they have SjS.  The bad news is, they have real bad SjS.

Is it 6 of one and half dozen of the other?

Sicca is caused by several things.  Probably the most common mechanism is neurological, via disease like SFN and drugs.  Inflammation of the salivary glands happens in several diseases, not just SjS.

It is really hard to sort out what one has.  I am not sitting too tightly on my 'diagnosis' of SjS.  My dry eyes altho very severe they are a sideshow to what is going on with the rest of me.

Justdave

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #31 on: January 25, 2010, 04:53:56 PM »
Hi Hehewuti,
       I am Male with Sjogren's. Just recently diagnosed.  Mine did not start down the normal path and it confused me and host of doctors
on what was going on.  Good people, hard working but the disease played peek a boo on us.  It hit my nerves and brain first, I developed
tremmors and speech and memory became crippled. Then it hit my lungs and it became hard to breathe at times, I got vasculitis on my skin, then
all heck broke loose.  It wasn't until some time latter that I finally developed the dry eye and mouth,  the final clue.  

     I have been to more nuerologists than I can count, lung doctors, all tried to help, some thought I was nuts.  I couldn't explain what it was
and why it would come and go. But it was crippling.

     Then one one of my blood tests my ANA was high and on a biopsy they discoverd vasculitis. They put me on steriods and everthing started to turn around quick.  Then it was back to the drawing board to figure out which one, I am hovering between Lupus and Sjogrens, but my Rhuemy thinks it's Sjogrens but he isn't ruling out something secondary, for instance I have lung nodules that appeared, that isn't a Sjogrens thing, but it is a lupus thing. He says it's common to get more that one disease, it's not that clean.  But the dry eyes and dry mouth gives it away.

     I wasn't too happy when I learned I had a disease that woman get usually,  I would imagine I am not alone so we (MEN) tend to be quite about it and just sort of sneak in and peek.

  
« Last Edit: January 25, 2010, 04:55:57 PM by Justdave »

Billydude

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #32 on: January 25, 2010, 06:38:24 PM »
Yes,  men as a rule are conditioned to be strong and not complain.    Also,  seronegative here too.   My worse problem is the auntonomic neuropathy.  I still don't really have dry eyes or mouth to a big extent.   

irish

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #33 on: January 25, 2010, 09:18:42 PM »
Welcome to all you men. Yes, women get sjogrens more than men, but chances are men are not getting diagnosed because as mentioned before they don't go to the doctor as often. Also, one of the more common problems is gastric reflux with the accompanying heartburn which is treated with OTC medications and doctor probably is the last one to know.

Chances are any of us who have gotten diagnosed have had the sjogrens for years. It travels to different parts of the body and at different speeds in all of us so it is not like there is a "cookie cutter" pattern to go by.

I don't know if any of you have noticed that on the Home page there is a choice for "articles"--this section has a number of articles on CNS problems that are associated with sjogrens. Also, it is not uncommon to have the central nervous system problems show up first in sjogrens. I had the CNS issues long before the dry eyes. Actually dry eyes were about the last problem that showed up---so far.

Yes, if you have one autoimmune disease you will probably get another one. They seem to travel in a pack.

Also, in the years since I was diagnosed (2003) after being bothered since my late teens, early twenties, (I'm 67 now) there has been a lot of new information out there. Doctors always thought that dry eyes and dry mouth were pretty much it with the sjogrens. Now they have decided that it is good to start treating with the Plaquenil as soon as possible to help stop the autoimmune attack on the body. If your doctor is not contemplating adding this drug to your treatment plan I would talk it over with him. You may need to find a new doc. Doctors need to be aggressive with this disease as it can get nasty at times.

The best thing both women and men can do is to eat a good diet, get plenty of rest and pay attention to what our body is trying to tell us. Most of us have families and responsibilities so it bohooves us to take good care of ourselves. Also, make sure that you get medical help for any depression that comes along. People with sjogrens have a high incidence of depression as do other autoimmune diseases.

We need to make sure that we give ourselves a good talking to and try to keep our spirits up and roll with the punches. It does no good to say "why me" nor does it pay to become bitter about it. If you look around you there are a whole lot of people with health issues and many of them are much worse than what we have.

If you are having financial issues don't be afraid to ask for help and check out the county and other places that you hear about. We just can't do all things when we are sick. Sometimes we have to quit work and that is a bummer. There are some people that havae found part time jobs that they can do from home which is a real blessing. Where there is a will there is a way. Also, it pays to be cheerful because we will not drive our family away with our poor attitude. A;so, if you keep smiling people will wonder what you are up to. Irish ;D

Bernice

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #34 on: January 26, 2010, 09:24:09 PM »
Irish,
Good, sound advice!!!

navydad

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #35 on: January 27, 2010, 04:50:24 PM »
Sorry Inga,, didnt mean to say Upbeat, I kinow how you feel,, I have never never never had a day where I actually felt like I was coming out of a flare,, its there always,, never goes away, I got a bunch of paperwork from the neuros yesterday,, they feel the SFN may be SS,, Lupus or systemic sclerosis, BUT,, they never did a good search for the cause of it, sometimes I wonder if its SS at all,, I am almost afraid to eat anything anymore,, the autonomic nonsense makes things rough,, I complained for months that my stomach was slowing down,, ah,, thats just irratable bowel,, ok,, Idiots,, my hands dont work well anymore, they feel like they been burned off,, I drop things constnatly,, I want to throw something though a window,, I am so P---ed that this thing is eating away at my nervous system,, I;m tired of calling doctors,, faxing paperwork to social security,, I am waiting to see if I;m going to get fired,, al because for the forst two and a half years i wasent taken seriously,, was even told that maybe a round of shock treatments might help,, WTF, ,, the EMG studies never showed anything,, the neuros in there naratives said they didnt do enough biopsy to determine the nerve lengh that was involded,, then why dont you do it,, there even looking for a occult cancer,, (parenteoplastic syndrome), its been a comedy,, I;ll give my GP credit,, he finnaly threw his hands up and said I have no idea whats going on,, that began my search,, I;m just tired,, tired of the day to day fight,, it is a struggle,, and its been just horrible watching my quality of life shrink to zero,,
  as for the red dots, I got them on the pams of my hands and the soes of my feet,, hundreds of red dots,, after about two weeks they faded and my feet and hands peeled,, this happened before and the dermotologist had no clue then what it was,, why do we get the weirdst things going on with our bodys?,, Inga,, I feel for you,, I believe I am going through exactly what you are

inga

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #36 on: January 27, 2010, 04:55:52 PM »
Oh Navydad, I was just teasing you.  I try to be upbeat but lots of days, I feel like just what you so eloquently described.

So on the dots and ANA, do you know how high it was and what pattern the ANA showed?

ohboy!

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #37 on: February 28, 2010, 05:39:01 PM »
I'm a male and was diagnosed with sjs five years ago.  I've visited this site several times but never registered or posted.  I've also been diagnosed with asthma, sleep apnea, heart disease and a host of complications.
I just need to vent.  It did bother me that I got diagnosed with a women's disease.  Now I don't care  and just want answers.  There don't seem to be any.  Quality of life keeps going downhill......I read in some medical sights that most people with sjogren's lead a full, rich life.  Really????
I used to teach band at a high school.....that's gone.  I used to play my saxophones everyday.....that's gone.  I used to fish in the summers.....that's gone.  I used to hike in the mountains and national parks.....that's gone.  I used to ride motorcycles.....that's gone (brain fog at 70 mphs on two wheels is not a good idea).  I loved my full sized pickup....now its a little one so I can actually get in and out of it.  I used to have sex....that's gone.  Sitting in a church pew is torture.  I walk with a cane (weak muscles and my feet don't end up where I tell them to sometimes)  and wal-mart is not an option without a power chair.  I finished a masters degree as my health started to wave bye bye and am fortunate that I am now working as a Jr. high counselor.   I spend most of my day in a chair, but even that is absolutely exhausting.  I worry about how much longer I can do that.  I've quit telling my doctor new things or things that simply won't get better because I'm tired of hearing "hmmm...you say your still tired etc. ?".  I have  a fantastic wife who helps a lot.  I don't know if men get worse symptoms or not, but my heart goes out to everybody with this illness.  We are the only ones who understand how it makes us feel.  Anyway, I live in a small remote area and I often feel alone.  Male or female doesn't matter.  Much of what is written at this sight helps me realize I'm not  alone, or making this stuff up.  I would hug you all....   

Scottietottie

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #38 on: February 28, 2010, 07:03:30 PM »
Hi Ohboy!  :)

Welcome to Sjogren's world. Quite a few men in here. (I'm not one of them) As one of our members often says "When you're here you're never alone"

Hope you find the site useful and vent any time you feel like it!

Take care - Scottie  :)
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Bernice

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #39 on: February 28, 2010, 07:12:04 PM »
Hey Ohboy!

Welcome to the site!

Yeah you guys are few and far in between, but just know that we ladies here appreciate each and every one of you. I can only imagine it would be kind of hard for a guy to be labeled with a strange thing that is normally assigned to women and would think it would take some getting used to. which leads me to believe that there are many more guys visiting the site but not making themselves known. Not many manly men want to spend their time relating with us women :'( :( ;D ;D ;D ;D

But that's o.k. too just as long as they are visiting and being helped with whatever issues they experience.

It would be helpful if they did in that their history and stories could possibly be beneficial to the few other guys here, plus it would help them feel free to express what life for them is like as opposed to hearing or reading others. This disease can be quite lonely, especially for those of us that don't have the understanding or support of others going through what we go through. So I say to you congratulation on a milestone of acceptance and growth.


Patze

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #40 on: February 28, 2010, 07:25:26 PM »
Hi Ohboy,

Let me also welcome you to the SJS World and family!!!  Like it's been mentioned, please do peruse the sight as there are just tons of topics and scads of information that you just might find interesting.  Now I won't even mention how this has to be one of the friendliest boards around!

Yeah, I know what you mean when you talk about feeling alone, it's so tough when you're ill with something that can't be seen outside of the doctor's office/labs.

Again, welcome and I hope to chat with you soon.

Take care of yourself now -

Patze
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Billydude

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #41 on: February 28, 2010, 10:29:31 PM »
Im a guy here and I do think it effects men differently.   Both my Rhumy who wrote the book about Sjogrens "Body Out of Balance" as well as the director of the Sjogrens study at UCSF who is monitoring my progression  both say it offen effects men  differently.   For me dryness is not an issue at all.  CNS problems,  fatique and just recently joint problems are the main complaint.   My primary has six patients with Sjogrens and says I'm the worst case.

Epson

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #42 on: February 28, 2010, 10:44:13 PM »
Ohboy,

I'm a guy with SS and I can relate to everything you said, my quality of life has also taken a nose dive.  I have done a lot of research on SS and from what I have read leads me too believe that the differences the men and women have with this illness is due to our hormones. 

Welcome to Club Misery.

Joe S.

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #43 on: March 01, 2010, 03:38:18 AM »
I agree that there is a difference between men and women. Some is hormonal and some is societal.
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Patze

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #44 on: March 01, 2010, 05:16:40 AM »
That's funny Joe!  :D


Patze
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