Hi all , I first became ill about 8 - 10 years ago with all the simptons that pointed to sle Lupus , rash ,itching ,

pluracy,sunlight exposure ,ect ,the worst i think being fatiqued and aching bones during a flare but all blood test i have had ,so far are in normal range !!! I have been recently diagnosed with Sjogrens via a lip biopsy (as again bloods were in a normal range ) I have been told by dermy that I do have a type of lupus ,Cutainus Lupus and vasculitus , I also have Multi nodular Thyroid , I have just come back to work after being ill for 6 weeks felt and looked terible couldnt move, it hurt to much , chest infection and breathing on walking awfull loads of other things !!! I feel such a wimp t times ,I am on plaqunil wich have been taking for a year , I do think they help , my GP has started me back on Steriods again .

I still think I have SLE but blood tests are all normal , where do I go from here ??

5 Replies

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  • Have they also tested you for Hughes Syndrome (Antiphopholipid Syndrome) this frequently goes with Sjogrens and Thyroid problems, often a history of severe migraines, or miscarriages or other strange incidents in the family. Mary F x

  • Thanks no they havent and i have had 4 miscarriages ,and suffer from headaches a lot i shall ask on my next clinic visit XXXX

  • Hi I sent you a private message, if you are In Australia, I know who has the expertize with this, your medical team could ring for advice or you could go and seem the. Mary F x

  • Many Thanks X

  • Hi I too have SS/lupis combined and suffered from terrible fatigue plus the symptons you have described for yourself.Two years ago I went onto the natural medicine Mannatech and have improved immensley. It takes a few months to take effect but worth trying. I am now off all pharmaceutical medicines which all have side effects plus drying your body out even more. Mannatech works on the cells of the body which are damaged by free radical attacks therefore causing auto immune problems. It helps to regulate the damaged cells. it is not a cure but certainly improves your quality of life.read the article in health unlocked where I have replied to a bladder infection and medication causing dryness. I have given information on Mannatech and the address to inquire about it.The medication prescribed by Doctors just masks the problems it does not get to the root of it. I have struggled for years with various problems with SS and lupis and no useful help or answers until mannatech rescued me.It can be taken with other mecications. Check it out on mannatech.com.I am now free of all other medications and still taking mannatech. You need to stay on it. My sister who also has SS has been on it for 4 years and also improved immensley.

    Gypsy girl.

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