Hi everyone :),
I'm new here. I'm from the Netherlands and because I can't find enough information here, I decided to register, hoping someone can help me on my journey, searching for an explanation for my symptoms. For the last 10 years I've been having problems. I've seen a lot of doctors, but so far no diagnosis.... :(
What do you think?? These are my symptoms:
-Dry, red eyes. I splash water in my eyes, especially at night, because they are so dry. I had numerous infections in the past.
-My mouth is not extremely dry, but more dry than normal
-My muscles hurt/ muscle weakness. A lot of times I have hard time climbing the stairs.
-Problems concentrating, forgetfullness.
-Fatigue. Sometimes I feel exhausted.
-Again and again I have low ferritin.
-My ANA is weakly positive.
-I check some test from 10 years ago: albumin was just a little bit too low, alpha 1 globulin just a little too high. ESR a bit too high.
Hi Journey and welcome to Sjogrens World,
Although we are not doctors and can not diagnose, it is possible that some of your symptoms could be related to some autoimmune issues especially since your ANA is slightly elevated. Your best bet would be to see a good rheumy and see if you can be treated for your most bothersome or painful symptoms even if you do not have an "official" diagnosis at this point.
You mention that you have seen a lot of doctors...was one of them a rheumy? If not can you be referred to one?
Good luck in your "journey"...we are here for you if you have any questions or need information or just a "listening ear". You can put a topic in the search box in the upper left hand corner of this page and other posts will come up related to that topic...that may also help you out with some of your questions!
Good luck and WELCOME!
Hi Journey :)
Welcome to sjogren's world. I agree with lynnmarie. Try to get an appointment with a rheumatologist and get them to do the blood tests you need to see if they get you closer to a diagnoses. SjS can take a while to diagnose as other things can cause many of the same symptoms.
I hope you find the site useful.
good luck! Keep us posted.
Take care - Scottie :)
Try not to splash water in your eyes. Tears are salty and regular water will sting your eyes. Try using eye drops if they are dry.
Thank you al for your warm welcome. ;D
I haven't seen a rheumy yet unfortunately. I've only seen specialists for internal diseases, but they all did practically the same bloodtests and all, so that didn't help me any further... Next week I'm going to see an eye specialist. I'm getting the schirmertest for my eyes. I think the doctor wants to wait and see what the results are of the schirmertest first. I've tried lots of eye drops, but I haven't found drops that really made a big difference, that's why I usually splash water into my eyes, but I will ask the eye specialist if he has something better for me.
I'm really happy to have found this forum. ;)
Hi journey :)
Hopefully the eye specialist will be able to prescribe some more effective drops for you. I don't know what it's like in the Netherlands but in the US one can buy many drops oneself that one can not buy in the UK (where I live) and I have to get a prescription to get them.
Good luck in your search for answers. Keep us posted.
Take care - Scottie :)
In the Netherlands you also need a prescription for eye drops.
I forgot to mention that I also have heat intolerance. And brain fog, wich drives me crazy and makes me really insecure. I've always been a perfectionist, so this really bothers me. I can say really goofy things when I'm in a conversation, or I'm talking about something and all of a sudden, I forget what I was talking about. So embarressing. :-[
Thanks for all your support! Now I have to wait and see what happens at the eye centre....
DOnt worry about saying goofy things, I do it all the times,, half the time I repeat something something I just said ten minutes ago,, boys think I have dementia,,
Even though I haven't been diagnosed yet, it's nice to be able to talk about this with people that understand. ;) I really hope I will finally find out what causes it after all those years. It's really difficult to explain to people if you can't say where it's coming from. They all think it's probably just in my head or they don't take it seriously. It's also difficult to explain to my boyfriend, he doesn't really understand how it works. But then...even I don't get it as long as I don't have a diagnosis....
Frustrating. >:(
Brain fog is really common!
I have brain fog but it was at its very worst when my underactive thyroid had not been diagnosed. Thyroid medication, in my case, helped it a lot. I think Plaquenil helps too but I still often forget what I am saying mid-sentence.
Heat intolerance is common too.
Take carev - Scottie :)
Hi Journey,
Let me also welcome you to the SJS World! Please look around the board as there are a lot of topics that you just might be interested in. You can locate them by using the search engine in the upper left hand of this page. If you can't find what you're looking for, don't be shy and ask as there is usually someone about that just might be able to help.
Take care of yourself -
Patze
Well... I've done the Schirmertest and it was ok. right eye 15 and left eye 10. So I don't know what to think anymore. I've read that with 20 % of people with Sjogren their Schirmertest is normal, but the eye specialist immediately told me I don't have Sjogren.
She told me I have blepharitis, an inflammation of the eyelash follicles, along the edge of the eyelid. The symptoms can be a foreign body or burning sensation, excessive tearing, itching, sensitivity to light (photophobia), red and swollen eyelids, redness of the eye, blurred vision, frothy tears, dry eye, or crusting of the eyelashes on awakening.
So I'm now wondering wether I should still ask the doctor to do a blood test to check for Sjogren or maybe check wether I have another rheumatic disorder? ...I just would like to know where all my symptoms come from.... :'(
Howdy Journey, happy you have joined us. I am curious, did your eye doctor perform a lip biopsy on you, when you weren't looking? No? Then I am afraid that she must be using a crystal ball. I am sorry for the sarcasm. Your Eye doctor was premature in saying you do not have Sjs.
Blepharitis refers to inflammation of the eyelids, particularly at the lid margins. It's a common disorder in the general population and has even higher frequency in patients with Sjogren?s syndrome. You really need to see a rheumatologist. They specialize in autoimmune problems. You could have different autoimmune issues going on instead of SjS. Do not hesitate to push for answers.
Seeker
Thank you so much for your reply, Seeker! ;)
No, she didn't do a lip biopsy... (she was an eye specialist, but she was still in training I believe)
I also read they can to a test to see if the quality of the tears is ok or not (I think it's called break-up-time test here) and there's the test with bengal red, where they check if there's any damage or something.
None of this has been done. I cried my eyes out on my way home. Sometimes I feel a bit lost, dealing with problems but not knowing where it's coming from. (I've been searching for 12 years now).
I missed an appointment for physiotherapy last week because I forgot. (this happened several times before) Today I was cooking something I've cooked several times before and it took me a long time to remember how to do it, I just couldn't concentrate. I was also so tired. I sometimes feel like I'm suffering from dementia. :-[ I was cutting up some meat and my fingers started to hurt again. Seems to me that's not normal? My legs still hurt and sometimes also my feet.
I was wondering whether this could have anything to do with sjogren? I've had swollen glands in my groins about 7 months ago, also a swollen/inflamed gland in my armpit about a year ago and I sometimes have swollen glands in my neck.
These last two weeks I have little things in my mouth, I'm not sure, but maybe you call them aphtous in english??
Journey, read some of the previous post of others. You will find that most of us had suffered for years, before getting answers and treatment. Part of the problem is that Sjogren's is still considered in the rare category. So many doctor are not as well informed as they need to be.
Some of your problems could very well be due to an autoimmune problem. That why you really need to see a rheumatologist and be checked out properly. When you do see one, be sure you have a written list of symptoms and a good list of questions. write down the answers given. Do a little research on you own. Again check out the past posts on this forum. You will find a wealth of information.
I had to be very proactive seeking the answers. (That's why my handle is Seeker). I was very fortunate to find this forum. It has been a great source of help and comfort. You will always find a sympathetic ear and a wealth of knowledge here. Keep seeking and I know you will find the answers you need.
G'day
Seeker
I will definitely ask my doctor if I can see a rheumatologist. I just hope he will agree to that. I've been to the doctor many times and until now, no results/diagnosis, so I'm a bit afraid he'll think it's 'between my ears' or that it's just stress or something... But I'll try. I'm reading as much old posts as I can, trying to learn more about sjogren. I'm so happy to have found this forum. I can't find that much information here in the Netherlands, so this forum is a blessing.
Thank you very much for your help! :)
Well I've been to the doctor today and asked him to send me to a rheumy, but he said that most rheumy's usually prefer the doctor to do some bloodtests themselves first, because otherwise they get a lot of patients with vague symptoms which probably don't need a rheumy.... ::) I don't know if that's true, but at least he's now giving me a bloodtest to check for rheuma, SSA, SSB, anti CCP (and ESR again).
So if those test are negative as well, I'm giving up my journey, because than I really don't know what to look for anymore. ??? I'm having the test tomorrow and twelve days after I can call my doctor for the results.
...
How does the health care system work there? Do you need to have a referral from your regular doctor to see a specialist?
Don't give up hope no matter how the blood work comes out. Results can vary from person to person a -lot-.
If you can't get a referral to a rheumatologist, maybe you can get one for neurology? Hand and foot/leg pain plus brain fog should meet their criteria for being seen, maybe?
Thank you for your support. Yes, I need a referral from my doctor to see a specialist and I'm pretty sure if the lab tests are negative he's not going to give any referrals anymore. I just have this feeling.
...I tried to do a test on my own a little bit...please don't laugh :-[... but I did a sort of "spitting test" to see how much saliva I have per minute ;D
It was hard, I didn't get more than 0.2 ml/minute and foamy (white). I have to say I ate some liquorice a minute before. I had a very dry mouth afterwards and my glands felt a bit agitated/itchy.
Does anyone have anything to say about this?
Hey, spit tests are a valid medical diagnostic tool. No laughing ;)
Can you change your primary doctor by chance? Ordering that blood work is a good move but if you really don't have faith that he will see you through to a diagnosis and relief...
I'm not sure by changing my doctor, I'll think about it. Even though I have this feeling that he thinks there's nothing wrong with me, he's done more than other doctor's so far (allthough I would prefer to see a rheumy). I think I'll wait for the lab results first and then go from there.
I tried to find some more information about certain symptoms on this forum. I had to find out what post nasal drip was first, but that's something I have too. Also my glands in my neck are swollen a lot of times, I have a sore throat a lot of times and sometimes my voice is hoarse in the morning or when I talk a lot. As a child I had my tonsils removed (because of ear infections), but one grew back. It is swollen regularly. Can someone tell me if these can be symptoms of Sjogren? I tried to find out by searching this forum, but I'm not sure?
I was also wondering whether I should post these questions here or in the other board?
I called my doctor today and was told that all my labtests are negative.
I've decided to end my journey after 12 years. I've had many tests and hardly anything was found, so I'm done with it.
I wish everybody all the best and thank you all for your help.
Hi Journey :)
You don't have to leave this forum. I'm sure you will still get support in here. As you must have read there are quite a few people in here who spent years looking for an answer and many still have negative blood work.
Take care - Scottie (who knows what its like to want a test result that is positive even if in another way she doesn't want it!)
Hi Journey,
I often joke that I'm the sero negative queen, and in a way I do probably have more negative test results than most members here. But you see, even though my blood work is still negative, the rheumy is treating me as though it's positive (he diagnosed me as having SICCA for the first several years and only changed that status about a year and a half ago).
I understand the sheer frustration of not being diagnosed and having a doctor give you the stink eye. Egads, it reminds me of the GP that kept telling me that there was nothing wrong with me as the thyroid symptoms were just accelerating and she did nothing for almost a year (had a thyroid scan done a few or three months after I started to see her about these problems, and the report specifically said that I had a goiter that was pressing against my throat, several nodules on the thyroid, just lovely. Finally had to push the issue before she referred me to an endo and he was surprised to say the least).
You know, sometimes your body is just not ready to give up it's secrets (shucks, I don't think mine will ever give up anything! ;)). But the real question is your rheumy (or primary) willing to work with you with your symptoms?
Take care of yourself, and I hope that you'll stay -
Patze