men with sjs and doctors looking at me like i am crazy

[jas1223]

i am new with symptoms as i have said before

and it is taking weeks  or months in between doctors apointments
and when i metioned sjogrens to the ENT doctor he looked at me like i was crazy

is there a specific test that i should ask for when i see my gp next week because he does not think
its sjogrens. all he has done was cut back on my synthroid  because i was having anxiety

like i said i have on and off dry eyes
dry mouth although it seems to have stableized to a specific level of dryness still very hard to deal with
and general feeling  tired, cold, and dry skin

is it so rare in men that they dont consider and my age is 33

or is there somthing else that causes these symptoms

i live alone and have no family to turn to for advice

just feeling like i am loosing my mind

[Scottietottie]

Hi Jas 

Did your doc do a blood test before he cut back on your synthroid? Anxiety can be a symtom of both an over active and underactive thyroid. Fatigue, cold and dry skin tend to symptoms of underactive and your throat can feel rough then too.

Do you see an endocrinologist? That's the kind of doc I see for my thyroid. 9 out of 10 people with an underactive thyroid are female. Same percentage as with SjS I believe, so I don't know why your doc is so resistent to the idea.

Check whether your synthroid was lowered according to blood test results. If not - demand a bloodtest!

Take care - Scottie 

[Calli66]

Have you been to see an ophthalmologist? I know several people who were diagnosed by their eye doctor---because of dry eye symptoms. Having their opinion backing you up can help when you go see other specialists.

Calli

[Epson]

I was told that I was just getting older and this was all normal, it wasn't until my foot doctor thought that I had rheumatoid arthritis in my feet and referred my to a rheumatologist and had blood work done, that I found out that I have Sjogren's.

I am a dude, a big dude and yes I have a chicks disease, no one should be looking at you like your crazy until they have done the necessary blood work to determine whether or not you have a rheumalogical disorder.  You can't tell if someone has Sjogren's just by looking at them.  I even had an ultrasound of my kidneys and the report said I had an ovarian cyst, fortunately this was a typo.

[beverley]

It was an optomath ... whatever they are at the Eye Infirmary, who actually diagnosed my Sjogrens because of my dry eyes.  Have you had a Shirmer's test yet?  Blood tests aren't always cooperative and don't necessarily show up SJS.

Beverley

[wednesday mc haggis]

jas

most of us have been looked at like were crazy, whioch just doesnt help matters.(90% of SJS sufferers are female , 10% male according to figures) as janna lees said it makes you wonder if there are more male sufferers and they just dont get diagnosed due to docts thinking its solely a female issue its not  , as unfortunately the men on this forum can testify to, get to an opthamologist, as to diagnose SJS you neeed to fit 4 of 6 criteria and one of the criteria is dry eyes. I know its a horrible scary time, and with you not having family to turn to, but you can come here for support and understanding ,  and advice, read round the forum ,you ll get alot of information from posts, and though its blooming hard, try not to stress too much as it just compounds the situation

T x

[navydad]

As a male that has been told by two rheummys that I have SS, and a GP who said I dont,I am one of those stuck in limboland, I;ll tell you that I have run the gamut of test,, lumbar punctuces, MRI;s, and told while in hte hospital the last time that a hospital is for sick people,,I thought the very idea of not being able to walk was a good readon to be in the hospital, as one who was told the reason i was having trouble walking was a sciatic nerve, then through a biopsy of myleg showed significant loss of nerve fibers, then all of a sudden the doctors started to take me partially seriously, so now I;m stuck wit legs that cant tolerate cold,, I walk like a duck, and have ENTs that cant do anything for my sinuses,, and yes they have cultured my sinuses,, it showed fungal infections again, so I take there meds for that,, and it just gets worse,, my fingers are always cold,, I really dont know what to do ab9ut anything anymore, If I go to one more ER,, they sill surely lock me up in a psych ward, sometimes I wonder if I really do have SS,, nothing could make me so sick andnothing show up on the same old blood wrok, they run all the time
I wonder how many people just die from stuff that doctors just miss,, I;m sure it happens ll the time, and i wonder if I;m going to be one of them,,

[baddabingtim]

I think most GP are not familiar with it because it is beyond there normal scope of treatment. I had to explain to my GP I had a lip biopsy to test for SS - he had to go google it to find out why - And this guy is a very good OD - My ENT is the one who suggested SS for me - he said get a lip biopsy after my blood work was negative - I ended up with 2 and still have no diagnosis - I am to see a rheumy at end of April - that appt was made 3 month ago...

So like you and the rest - I am in limbo land wondering which way is up

[Billydude]

Jas,  another man here.    I had to self diagnose and suggest to my GP what I had.  Fortunatley he was open to the possibility.  My blood work all shows negative which is not unusual.  Nearly half of the Sjogrens people have negative blood work.  I was finally diagnosed via a lip biopsy.   There are differences of opinion on the lip biopsy here on the site as many have had less than positive experiences with it.   Mine went fine and I was happy I had it as it finally confirmed a diagnosis.  I too went to the doctor for years with lists of complaints and was always being discounted.   GP's don't always have a lot of experience with this so ask to see a rhumatologist or endrocronologist.
I have some youtube videos about my experiences if you care to look.
http://www.youtube.com/watch?v=8AG3tcYUfvs
Steve

[MusicGuy]

Hi Jas.  After several years (7) and this and that going on with me..........added with several different docs.... i heard about SJS from my GP and the referral to the Rheumy.  i thought the mouth and eye was normal until we ran through all these different lists.  my GP was getting frustrated with things happening with me.  it really took a combination of blood tests, events and docs to finally get to this point.    A little over a year with a diagnosis, i can't say i am doing any better, but i am learning how to manage my symptoms. 

All the docs are accepting of the SJS diagnosis for me and my age.  Most agreed that this did not enter their mind because i am a guy but it all fits for them. 

i wish you well.  not sure getting the diagnosis matters or not right now.  it really is how you treat the symptoms.....and they seeem to just act randomly.

Dave