Any men with Sjogrens out there? Want to ask some questions..
There is one for sure and maybe 2 guys on here. They don't come on much but are here off and on. I think it might help if you could put down some of your symptoms and how long you have had them..
I think that the guys will read through the posts frequently and post when they have something to say or ask.
If you go to the search (above) and place.. male or men in forum.. you might end up getting some posts that men have done. Might want to add year 2021 cause I know there have been a couple guys on here in the last 6 months. One of them comes and goes and has been here several years. Sorry, can't remember his name right now. Good luck and be patient. Good things come to those who wait. meirish
I am a 49 year old man and I was diagnosed about 15 years with Sjogren.
Welcome felpeyu2, I am thinking this may be your first time on this forum. Hang in there and we might be able to track down 1 or 2 of our men who have been around for awhile. I am going to see if I can find one of them and will return when I do. Thanks for stopping by our forum. meirish
felpeyu2,Well, I just went down to bottom of the page and went back one page at a time through 17 pages of past posts and noticed your name in several places so now know that you have been on this forum a few times. Hopefully acer will check in and read through these posts and see that you have arrived to help him out.
I have to add that it was very interesting flipping through all the posts over the past several years. The subject matter is unbelievable and there is so much info in there for people that might help them learn how to be a sjoggie, how to deal with doctors during some of those difficult times. different kinds of meds and how they were given and if they helped. A treasure trove of information experienced by autoimmune patients and quite a few soon to be diagnosed autoimmune patients.
If the doctors had time they would truly learn a whole lot about the various complaints and difficulty in diagnosis we all have. It might help some doctors learn to be more patient about how they deal with us. Just running over the past years of so many of our lives. Take care all and hope you can be of help felpeyu2. meirish
I remember a man called Gorn who was on here fairly recently.
I remember seeing that name lately also, Seems like he was on the forum quite often for a while. Maybe he will come through again soon. Thanks. meirish
I am not on much anymore but I have Sjogren's symptoms. I may be deluding myself but i think i am finally making progress against them. The challenge is all the damage done before I got here.
I am a 41 year old man with Sjogren's, diagnosed at 32. Sorry I don't come on as regularly as I should. Feel free to use the message board or message me directly if you have any questions I can help with. I know everyone on the board is very helpful, hope we can help you out :-)
Hi Everyone I have so many problems with this at one time I have dry mouth with pain in my glands dry eyes I had severe back pain that I had to go to the ER 3 times then my feet are burning and toes were blue problems urinating and ED which I didn?t have before I lost smell and taste which is driving me crazy cause it?s hard to eat healthy and been to a rheumatologist who says I have something but not Sjogrens if this is not Sjogrens than what is it my GP tested me with a blood test and of course negive in blood but borderline autoimmune factors ?The hospital loading me up with pain medication anc took mris but everything came out fine except the blood results they said I have something wrong with me but they don?t know what I keep saying to them it seems like Sjogrens they keep brushing it off anybody think this is Sjogrens? Anybody know of a good Rheumatologist in Florida? The pain in feet and arms are terrible no appetite?..
I?m only 51
Do you think it could be Lyme disease?
And do you have a lot of other stresses in your life which might be exacerbating symptoms?
No was tested for everything lymes MS HIV etc ? it?s Sjogrens CNS but for some reason without a dx they dont want to here it in the blood test the reading for Sjogrens was .02 i don?t know if that means anything but I?m in pain from my lower back down my left foot ?.. it?s making it hard to walk
So sorry to hear what a difficult time you are having.
I have had typical Sjogrens symptoms since 2015, I think it was triggered by a virus and a big emotional stress, though when I think back, I did have some very minor issues years before that. But it really hit hard in 2015.
All my tests have been negative - Schirmers, at least three blood tests. Every consultant I see agrees there are dryness issues with my mouth/eyes/skin, but because each individual symptom doesn't seem to reach the Sjogrens criterion, each consultant says they don't think it's Sjogrens. I feel tired nearly all the time, but of course it's hard to prove something like that, and I suspect it's often put down to hypochondria.
I could and should have the salivary gland biopsy, but have put it off for a while, and now with the Covid crisis our national health service in the UK is terribly overstretched, and I would have to wait ages to get something as relatively unessential as that.
Have you requested a biopsy?
Have you had your spine checked?? Sjogrens can cause a lot of things but there are other autoimmune diseases that can cause neuropathy and dryness of eyes and mouth but are not Sjogrens.
Have you seen an ear, nose and throat doc and have you checked if there are any immunologists in your area who do diagnosis and treatment of autoimmune diseases. They are docs who have a lot of knowledge in this area of sorting out the results of all these autoimmune and allergy tests.
Also, life can be complicated getting diagnosed with autoimmune diseases and there are different treatments for some of them. The issue is that if the docs treat a person before diagnosis they can screw up the blood work and make diagnosis almost impossible. The best they can do is treat the pain in the best way possible with the least amount of meds possible as steroids or cortisone can mask symptoms which will make diagnosis more difficult. I know all this as it is what happened to me and it is what has happened to most of then people on this site.
Have they done tests to check for clogged blood vessels in your legs and blood work for diabetes? Neurologists are able to sort out the neuropathies or maybe refer you to someone they think could help you. It is hard work being ill and having to chase down a diagnosis but that is what happens with autoimmune diseases. Every single autoimmune disease is very different in people. The clue with Sjogrens is the dry eyes but come to find out there are other diseases that have the dry eyes also.
I can only tell you to pace yourself and keep on searching for doctors at universities and by talking to people. AT one time I called a call line at one of the big hospitals in Minneapolis in the state where I live. They gave me the number for a doctor and clinic that I have gone to for over 25 years. The best ting we can do is advocate for ourselves, make our life more simple and less expensive so we can live without so many financial worries. I am 78 and have been plagued with the blessed autoimmune disease since the 60's so I am aware of the things we need to pay attention to in life.
I always try to advise people to evaluate their life and attempt to wrap their brain around the fact that they may have to change occupations. It is good to research educational possibilities in your area and online that may allow you to work from home or work part time. If you need to call the social service department in your county or at your clinic or hospital and see if they can give you information or guidance. Just look under every rock, so to speak, for things that will make life possible. Always keep in your head that you will be feeling better when they can get you diagnosed. Also, remember that you could have sjogrens and you could have another autoimmune disease besides sjogrens. These diseases like to run in packs as they say. Stay positive and if depression starts in get it treated by a doctor as stress and lack of sleep are really hard on the chronically ill. Hope some of this will help and come back and do searches as there is a lot of information on this site by people who have had sjogrens and other AID. Good luck. meirisih
Araminta, You have been having symptoms for a long time and I think it would be wise to ask for a lip biopsy and if you have to wait months for it at least it is in the near future instead of just a thought in your head.
Had so many ailments and was under the weather for so many years and it was literally decades before a lip biopsy was suggested and it was positive. It shocked me as I didn't get dry eyes until after I got diagnosed. It also shocked most of my doctors big time. I did have the work "hypochondriac" written on my forehead I was sure because so many doctors just wanted to humor me along. I had kept telling them that it was autoimmune for years so it was almost an unwelcome victory for me.
I told the docs that I had places to go and people to see and I would not be coming to see you if I didn't feel sick and yucky so much of the time. Sometimes I have a doctor who has an autoimmune disease or a family member with one and those docs are gold. They get it and they know how to help. They may not be able to diagnose us right away but they understand the battle and where to go for help. Good luck, meirish
Thank you very much for your advice, meirish, and of course you are right. I will have to get a biopsy at some point, the sooner the better. But at present things are difficult here, it takes ages to get through to a surgery on the phone, let alone talk to a doctor. Our local surgery will be starting the Covid booster jabs and flu jabs very soon, so they will be frantically busy. I think I'll wait till that rush is over before I try contacting them.
I recognise that feeling of being labelled a hypochondriac. Yes, it would be good to have a doctor with personal experience of autoimmune disease. My ortho wrote to my doctor that I "looked well"! So that's all right then?!
That is interesting about the "he looks well. I am thinking that you are from GB and I have to tell you that it is the same way in the US when it comes to talking to a taped voice when calling the doctor and then given a list of "line 1" etc. to choose from and then waiting a long time for a human to answer then phone. I had a line this week that I called about 4 times and one time I waited 30 minutes and still no answer so I hung up. I just want to see how long I would have to wait!! I bet people have had anxiety attacks and maybe even strokes waiting to get a hold of someone who could answer our questions or make our doctors appointments.
It is a long wait for any scoping, etc where I live now and other tests as people have been spending the past 1+ years in their homes hiding from covid and just now it seems everyone want to see the doctors and have the tests they have been putting off. Enough said about that.
I have to tell you that I am now making appointments even when they are way in the future. I have decided that if I have a problem that needs some attention because it is chronic and but been eventful I will just go to urgent care. If urgent care thinks it needs more attention they sent you over to emergency. However, there are times that urgent care will write a referral and one might just get into the doctor sooner. It is sort of a crap shoot lately and probably be that way for a long time. Covid seems to have made itself at home in our lives for a good while. Just hang in there and do the best you can which just breaks my heart to have to say this. I hope that you can get some help sooner rather than later. meirish
Thank you, meirish. I wonder if things will ever be quite the same after Covid, I've heard that we will just have to live with it as we live with the flu, and of course there are bound to be more mutations.
I'm very sorry you're having trouble getting help when you need it. It's good that you have a contingency plan for emergencies, I just hope you never have to put it into action.