Could it be sjogren??

[journey]

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.

[lynnmarie219]

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!

[Scottietottie]

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 

[Madderakka]

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.

[journey]

Thank you al for your warm welcome.

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.

[Scottietottie]

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 

[journey]

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....

[navydad]

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,,

[journey]

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.

[Scottietottie]

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 

[Patze]

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

[journey]

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....

[Seeker]

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

[journey]

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??

[Seeker]

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