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Discussion Starter · #1 ·
Hello my name is Denise and I am a mother of two teenagers, wife of 20 years and beside my self at this point.

Over the last 5 years my ANA has been coming back with lupis. My ex family doctor as of three months ago kept saying if its true lupus then the lab will automatically run a second test. Don't worry its nothing. Well over the last 8 months my helath has taken a serious turn. I am in sooooooooo much pain I may get one day out of a week. I am so weak and tired, My balance is gone on bad days I have to focus to make sure when I am walking that my legs come with me and I don't fall. I have had mysterious fevers that come and go, when at work I have to physically hold my head up at times. the exhaustion hits fast and hard and some days I may only have an hour of energy. Migraines are a constant part of my life. I have had the rashes and sever reactions to the sun and I used to spend the whole summer outside, now if I am out for two hours I get weak and I get sun stroke very easy enven on the breezy days. I have had trouble with my memory over the months which is totally frustrating. I have had IBS since I was a child and even hospitalized for it the pains in my stomach days I don't know if its the ibs for something else. I have battled problems with my kidneys such as stones and infections and other joyous things. My joints I am really to give away especially my neck , hands and now my knee which is crippling me.

Over the last couple of years I have suffered a mini stroke which took my speech and cognative thinking for three weeks. Man when I looked at the lupus list I think I had it all except for maybe two of the things.

I now have a new family doc who looked at me three months ago and kept wondering why my blood tests were out of whack. On the thrid time of him wanting to send me again I said let me guess lupus. He was amazed I knew. I then told him what my family doc was saying and he was floored. He immediatly put me on predisone and something for my stomach it was the est week I had. Plus he then informed me I was in a major flare and that it was not acceptable that I had been left so long. I would just like to here from others who know what the daily battle is and if things get better.

Denise
 

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Hi Denise!

Just wanted to welcome you to this site and say hello!

It does not sound right that all your symptoms were not being treated!
At least now your new doctor seems to be taking action!

Is he also starting you on any disease modifying medication like Plaquenil?

Take care for now!

Lesley
 

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Hello Denise,
I can well rmember all the things you say. It can take a while to get the right mix of medications but you should be confident that there will be an improvement for you sometime.
Meanwhile could I please nag you about the importance of sun protection, it really does make a large difference. Not just for rashes but overall lupus symptoms.
x Lola
 

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Hi Denise and welcome,

The first thing I can say is thank God you changed doctor!!!

I should think that he tried you on a short trial of prenisolone to see if that helped you. The next step is definitely to ask for a referral to a rheumatologist and to ask about being put on plaquenil which is disease modifying and reduces the frequency and severity of flares. It is a med that takes a long time to work (3-6 months usually) and that's why it was not used just to test how you would react to treatment.

Also, if you had a stroke were you tested for APS? The blood tests are the anti-phosopholipid and the lupus anti-coagulant test. The last is badly named as it does not diagnose lupus at all but APS (or Hughe's syndorme or sticky blood). Maybe you were already tested for that following the stroke and put on blood thinners of some sort?

There are plenty of treatment options out there for lupus which should greatly improve things for you. Nowadays it is most common to be on a little cocktail of different meds which are finely tuned to fit your disease activity and you as an indivudual.

bye for now,
Katharine
 

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elisabethm
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:welcome: Denise this must be the hardest disease to get a quick answer for.I dont think that anyone has had a diagnosise first time i know that i did not.When i went to the rhumy he said yes i had it then i went back and seen another one in feb of this year and he said not sure.He told me to stop the palequin and i did.I went to my own doctor on wednesday and i told him what he said and he told me to get back on to the palequin and he would be writing to the rhumy to let him know what he has done as for day to day things i am sitting here at the lap top with my head on my hand and typing with the other and i feel so sick but dont want to give in again today hope to here from you again Elisabeth
 

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Discussion Starter · #6 ·
Once again I have been woken out of my sleep with a mind busting heachace and in pain in all the joints. I was hoping that when I went to bed last night it would ease the pain and I would be able to walk however no such luck still hobbling around. I do have to go back to the doctor this week and i am gong to push to see the reumie. Thanks for the words of campassion it does help to hear from others.

Denise
 

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Dear Denise, These early days are tough. Keep posting we are here to listen, and if you get a chance, go in to Chat. (don't worry if you are slow or fumble fingered in there, we are none of us Einstein!)

X Lola
 

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Denise it does get better. The beginning is always tough until you get things sorted out. It makes sense that you feel horrible if you are in a major flare and lost time not being treated! I have had this for 23 years and I can tell you that YES it does get better!! Hang in and let people help you.
 
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