I was diagnosed with Sjogrens syndrome 3 years ago and really have no idea what to expect from the disease. For example will it affect my life expectancy? and what can I expect to happen to my body? I have had some vague information from the internet but none that really answers my questions. The hospital was excellent with my care and monitored my bloods but as the degeneration was thankfully slow they sent letters to my doctor to take care of me 6 monthly. The doctor only gave me one appointment in 2 years so I changed doctors, again I have had to ring the doctors every 6 months I thought they were working for me apparently not. Obviously I need to care for myself as I can;t rely on the medical profession so I need to know what I am facing and for how long , especially what I need to put in place for the care of my husband and children when I can't. Can some one help me?
RE: Sjogrens Syndrome
Hi Macbeth
I am only familiar with Sjogrens in terms of having clients with Lupus that have Sjorgrens too, the way it generally affects them is dryness, ie mouth and eyes etc,
however I stress that you really need to get in touch with support groups etc and ask to see a consultant so you can get down to what "sjogrens" will mean for you....
the internet is great for finding out information but a lot of it can scare us or not equip us properly so I would try and get some time with a medical professional and sit and discuss what this means for you.....and your family...
Tigs
xx
RE: Sjogrens Syndrome
Hi Macbeth,
Here is a link to information about Sjogrens Sydrome,
Hope this helps answer some of your questions.
http://www.medicinenet.com/sjogrens_syndrome/article.htm
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RE: Sjogrens Syndrome
Hi Macbeth, try this website I was looking up about Sjogrens Syndrome for a good friend of mine whose mum suffers with it.
hope it helps you.
Vicki
RE: Sjogrens Syndrome
Hi Macbeth!
I too am a diagnosed with Sjogrens Syndrome (secondary to Rheumatoid Arthritis) and I am fortunate enough to have a very supportive Rheumatoid Doctor at the local hospital who recognises Sjogrens and in fact was the Doctor who diagnosed both SJS & RA.
The syndrome is different for each person and will also depend on what dignosos you have i.e. is it Primary(does it stand alone) or Secondary(alongside another auto-immune disease such as RA). It took a long while for my doctor to refer me on to a specialist - I just kept going back to the doctors and kept telling them how it is until they eventually sent me to a Rheumatoligist (I was suffering badly from joint pain as well as dryness etc)
There is an excellent site you may like to visit which has a forum and chat room etc but please be aware it is very easy to be drawn into thinking the worse when you hear some people relate how it is for them....not everyone will be the same .....however, it is a great place and way to offload sometimes when things are difficult or you feel frustrated and misunderstood. Try it for yourself www.sjogrensworld.org and another excellent site for information is http://dry.org/fox20020816/guide.htm .
I hope this helps and that you have some help and support from your doctor in referring you onto a specialist.
May I also ask who diagnosed you and how - the reason I ask is that not many recognise it and those who are alerted to it are often dentists who recognise the very dry mouth etc and others who deal with auto-immune type illnesses may also recognise it quicker than some G.P's for instance.
Kind regards
Moonfern
RE: Sjogrens Syndrome
Thank you,
you have all been a great help in giving me some peace of mind. In reply to Moonfern it was a female doctor at training college, she was determined to find the problem and continued testing and striking things off her list until she found the problem. My syndrome is primary and the dryness was not the major concern it was more the rheumatism which oddly enough I suffer in my muscles not my bones.
again thank you all.
Macbeth25