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Old 07-06-2011, 10:05 AM   #1
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danaalex HB User
sjogren's sindrom??

hello!
I am a 25 year old girl from Romania and the doctors here did not know/care to help me with a dianose and a treatment for the nightmear I am going through for more than 3 months.
My symptoms started with diffuse pain in my abdomen...later the doctors said it's the trayectory of the colon...so it started with pain in my colon..it wasn't to disturbing so i ignored it...after 1-2 weeks i started to be very very tired, fatigue..that i couldn't go to work any more or to anything all the day...a sick tiredness...after another week my salivary glands swalowed both sub-mandibular and parotids...i had no more saliva and i started to drink more water for the dry mouth. My nose is also dry and my eyes bother me and are swalown...after 2 moths i started to have also musclule and joint pain...headaches on the way of arteras...they considered i have an autoimun desease on the name of sjogren but the blood anticorps did not show at the tests...now i'm waiting the results of the lyp biopsy but i'm sure that also that is going to benegative..and even if not..they didn;t even take in to account when i said that also my colon hurts me...it looks like i have a general inflamation or i don;t know. The ususal blood analysys are all ok and in parameters except for the leucocite (white cells) that are a bit high but not to high. Please if anyone has an ideea on what this can be or what analysy i can make please let me know. Since 3 months i'm not able to do nothing i'm feeling very bad with all these sympthoms and i don't know what is next. I must return to work I have no one to help me.
Thank you in advance!

 
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Old 07-18-2011, 07:16 AM   #2
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RachinOz HB User
Re: sjogren's sindrom??

Hello Danaalex,
Sorry to hear that you are going through a difficult time. It can take lots of persistence to get a diagnosis for some. I was 34 when I received a definitive auto-immune diagnosis (I had symptoms from around age 16). If it is an auto-immune condition, most people have flares, where symptoms are more obvious and then they settle (sometimes steroids are needed for me). I am never really symptom free but have learnt to manage my symptoms better and more importantly know when to slow my life a little to give my body a better chance. I work full time and have a busy life with two small children. But I need to accept help at times or I would crash entirely. Keep pursuing that diagnosis. Auto-immune disorders can often be managed with a compassionate Dr, medication, lifestyle changes, good attitude and a little help from friends and family. Get a referral to see an immunologist or rheumatologist they have more knowledge than a General Medical Practitioner when it comes to this area.
Good luck with getting to the bottom of this
My thoughts are with you

 
Old 07-20-2011, 10:28 AM   #3
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danaalex HB User
Re: sjogren's sindrom??

hello!
First of all thank you so much for answering to me...since i wrote my lip biopsy arrived and they found an infiltration of lymphocytes and they said is compatible with sjogren sindrome...they did not give me any medicine or treatment at all because they said that also that can be dangerous....and to come back when the desease is worced...someone managed to speak with a doctor from another country and asked about my sympthoms and that doctor said that is very hard to belive that i have only sjogren...uffff...the problem is that really the doctors here have no ideea of auto imun deseases and i have a lot of painfull and strange sympthoms that i can not ask to no one about...i don't know what can happen i don't know nothing...i don't know if i understood corectly and if u have sjogren...if u do please i would like to ask you if my other sypmthoms are normal and if is the case to do something about it and what would be your sugestion...besides my muscle pain, my vanes hurt me badly..asipecialy in my hands...for example now i can barely tap on the computer...and feet...and the right artery of my head is hurting me and tenglelings in my head...is it normal with sjogren? is it dangerous? what can i take??about the phenomenal pain in my colon i'm not even going to ask because i understood it has no connection (allthough my sympthoms came all at once)...
thank you so much in advance and i am so sorry to ask you this but is very hard to be so alone in this...

Daniela

 
Old 07-21-2011, 04:53 AM   #4
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RachinOz HB User
Re: sjogren's sindrom??

Hi again,
Everyone is different with the manifestation of an auto-immune condition. I have 3 separate ones SLE, Sjogren's and Raynaulds phenomenon. The Sjogren's effects my eyes, skin, saliva and parotid glands. Systemic lupus effects my vascular system, muscles, connective tissue, and causes rashes. Raynauld's stops circulation in my fingers and toes when the temperature is not optimal. The Drs can't advise which condition is responsible for fatigue, destroying the placenta when I am carrying babies or which one is attacking the parietal cells in my stomach. But that isn't really important because the treatment is the same no matter which one it is. What I am trying to say is you may have one or several conditions and nothing can be labeled normal or abnormal. Without someone to diagnose and treat you properly you will have an extremely hard time of things. You need a referral and second opinion. Or at very least someone working to reduce the severity of your worst symptoms. I went through 3 months of being unable to walk, dress or lift a fork to my mouth (connective tissue swelling) it was terrifying. The Dr could not tell me what it was but at least he kept hunting for an answer. He settled on trying steroids and they worked for me. Not a cure but they relieve my symptoms. I use prednisolone in short term bursts because they can have bad side effects if you are on them all the time.
I'm sorry the Doctors sound so dismissive there, I don't know how it could get much worse for you. If you have no luck there is there a possibility of getting another opinion in a neighboring country? My Grandma was Czech and she said she used to travel to Vienna for medical help. Is your family sympathetic? Is medical care expensive in Romania? Sorry but it seems I have more questions than answers.

 
Old 07-21-2011, 07:59 AM   #5
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danaalex HB User
Re: sjogren's sindrom??

Hi! I'm so sorry to hear that you went through such a hard time...
In answer to your questions about my family...i have none my mother died when i was little etc etc,...only a brother who helped me a lot since i got sick but now he has to leave the town because due to the fact he staid with me so much he lost his job and didn't pay his lawn in the back for quite some time so I'll remain aalll alone, which is pretty scary. The rest of my family (2 persons)is better to forget really... For the fact that before I got sick I was parcticly giving my life to my job, my boss is now trying to help me find in a neighboring country or somewhere a doctor who has better knowledge but the problem is that me being from another country is quite hard to get some help from another place..at least until now the answers are "NOT"...but I keep hopping. And yes I spent a lot of money here for medical care...moreover because I changed 3 hospitals before they got the idea that it was an autoimun desease...actualy I told them about this possibility, they agreed and they sent me to a rheumatholog for analysys....and the only thing they found was in the lip biopsy...the infiltration of the lymphocytes..
My only hope is that I can recover a bit so I can keep my job (for how long I don't know) because if not...mmm...really I don't know what to say..

Thank you so much for your answers and support, we'll keep in touch
I wish you all the best, be positive and good luck because we surtainly need it

Daniela

 
Old 08-17-2011, 04:26 AM   #6
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RachinOz HB User
Re: sjogren's sindrom??

How are you going? Hope you have had a little more luck in your search for answers.

 
Old 08-21-2011, 06:22 AM   #7
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danaalex HB User
Re: sjogren's sindrom??

Hello!!!Since a week I am in Italy, my boss helped me find a better doctor here...I just stated the analysys and I asked for the

 
Old 08-21-2011, 06:36 AM   #8
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danaalex HB User
Re: sjogren's sindrom??

sorry...for the bipsy from romana so i don't have to repeat it here...ufff...anyway i fwlt quite bad hre i had problems with my colon, but bigger than in romania, not only pain but i couldn't go at the bathroom i was blocked..and belive me that u don't want to know how they solved this in the hospitall...i didn;t know that this procedure exists...they told me that these things ususaly happends to people over 75...but to me it happened because i am dry inside also in the digestive system from the sjogren sindrom...anyway doing the analysys they found everything wrong...the white cells almost 18000...the lymphocits verry low...etc etc etc..they wanted to qeep me in that hospital for further investigations but i wasn't able to remain because the next morning o had the meeting with the doctor for the sjogren syndrom in another hospital...anyway i repeated the analysys of the antibodys and i am wayting for that biopsy...meanwhile the doctor said that he blives i have also another autoimun desease maybe the celliac but not for sure..we will know...pfff. Anyway he said that the next appointmant will be on the 7 on september..meanwhile I hope I will not feel bad again . Also this doctor said that he doesn't belive to be any correspondamce betweeb this big pain that i have in the coon and the sjogren sindrom...anyway... Thank you so much for asking about how I am...I wasn't able to write anymore on the board I don't know why...let's keep in touch,
Best Regards,
Daniela

 
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RachinOz (08-22-2011)
Old 08-22-2011, 03:20 AM   #9
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RachinOz HB User
Re: sjogren's sindrom??

Well that's some good and some bad news all rolled into one. Hopefully they can start to get some balance back into your system. It's a pity that you couldn't stay a bit longer in hospital but I guess if they get all the information through testing they can start a treatment plan for you. If it is an auto-immune disorder, once they dampen your immune system you should start to feel human again. When things are in control you should be able to return to work. Thinking of you.

 
Old 08-23-2011, 03:15 PM   #10
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danaalex HB User
Re: sjogren's sindrom??

yes, this is what i'm hopping to!!!to start feeling human again. Anyway, consider that a little I am better because if I had to make this trip 1 month ago, i wouldn't been able to do it...today they made the echography to my saliva glands because on the side of the ear, on both sides, apperat 2 lymph nodules and they took a look, because now they are rather big...anyway after the echography they said it is not a lymphoma..and that at least now those nodules are not dangerous and that they are specific to the sjogren's syndrome. Anyway we are waiting for the other analysys..
Thank you for all,
a kiss
Dana

 
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