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Discussion Starter #1
When the DR's are trying to diagnose Lupus,
Is it right they have to rule out other things first, because Lupus mimics other ailments.
I'm really just trying to get around it all, i've read alot about so i just want make sure i'm getting it right.
Many thanks
:sad:
 

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Hi Doris and welcome to the forum.

Lupus has many faces and does/can mimic many other diseases so yes it is normal and expected that a doctor would rule out everything else before slapping a label of Lupus on your chart.

I went from Fibromyalgia to Chronic Fatigue syndrome to Multiple Sclerosis and eventually to present, Lupus, APS, and probable Scleroderma. My actual diagnosis is Mixed Connective Tissue disease as I have a overlap of different disease process going on.

To be honest, I am happy with the MCTD label on my chart. I would rather that then Lupus as it makes no difference what is the Title as long as the meds are helping you to feel better.

Good luck and let us know how you get along.:wink2::wink2::wink2:
 

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The Other Illinois Tammy
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Doris,
It is so right that doctor's have to rule out other things because of how lupus acts and that it does mimic other types of problems. This does take a lot of time but in the end if that is what it is then that is what label you will get. If the doctor is good he or she will get to the bottom of your problem. The gp may have to call in a specialist for help but if given the time they will find out what is going on with you.

I do hope in the meantime that they are treating the symptoms for you right? If they are doing that then they are doing what they can at the moment. If they are not then that is a question to be asking them. What can you give me to help me in the meantime while you are looking at what I have? If they are leaving you hanging in the wind that is not normal and should never be done. Although we know it does get done from time to time.

I do hope that you feel better soon and the you are doing well also. If you need to talk we are always here for you.
 

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Discussion Starter #4
Thank you,
And no i am not on any meds, and i don't know what's going on, i only found out cos the chiro wanted to know if there was anything else going on with my back, & she knew i was having a bone scan.
I am going to the DR's on tuesday to get stronger pain meds, i just can't stand it any longer.
your words are a great help for me, as i am feeling very low at the moment.
 

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Hi Doris,

This seems unacceptable considering your test results in the past and your presenting symptoms :mad::mad: The rheumy did some blood tests didn't she when you last saw her? Do you know the results of those yet?

I would definitely be going to your GP to get some adequate pain relief but I would also be ringing the Rheumy again and bringing to her attention that they have found RA in your spine, that your other tests are possibly six months away and that you need to be on some kind of treatment now. Some of the treatments used for RA (Methotrexate for example) are also used in Lupus, so it wouldn't matter what you had they could still treat you. However there is one treatment used for RA (Salozopyrin) that should not be used if Lupus is suspected. Interestingly enough RA is often found in Sjogren's patients and if I remember rightly you tested positive for that before?

You will have to be polite but forceful :wink2: it's ridiculous really!

sending strengthening hugs,

love
Lily
 

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Discussion Starter #6
Thanks,
I have not heard from the rhuemie yet, and i am waiting for a appt to see a muscle & nerve specialist, and i am thinking that i won't hear from her until i have been to that appt. Which to me is disgusting, cos yes it could be 6 months or more.
And yes sjogrens has popped up in the test results.
i just can't stop crying, which is proberly good for me cos i have kept it all inside. and everyone thinks i'm doing good, when i'm not.
You know the british stiff upper lip and all that, i'm usually a strong person, but........
 

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Doris, perhaps you should push to see her sooner, a cancellation perhaps? I know it is hard to be assertive when you are feeling so low but you really need some proper treatment started. The Drs tend to let you get on with it if they don't hear from you, assuming you are doing ok.... time to let them know otherwise.:( You deserve better and you know your body well, it is time you got some relief... perhaps you have a friend/partner that can fight your corner a bit for you? It is soul destroying when it drags on like this...please get back in touch with your Rheumy or if you are not happy with her then get another referral to somebody with experience in auto immune disease... don't forget to keep a diary of symptoms and a pain scale (0-10) so they can see what it is like living as you are at the moment... photos of any outward signs good too... I don't want to nag you..;) just want you to get something moving for yourself... take care, let us know how you get on.
Claire X
 

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Pamela b
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Poor you

Hi Doris

I only joined a few days and am so sorry for you and in sympathy.
I am in the same postion as you in that something has been oging on for a long time and no one took much notice.
I have an appointment with a rheumy next week ( which I am paying for as NHS would be September ) and this is only because after passing out in the field while walking the dogs my daughter phoning and telling them to sort it out.
Why cant these medical people at least take people seriously instead of ignoring us. Possibly they arent but I know from my experience thats how it feels.
We treat or animals better
However I do understand that they need to rule things out first but should give us something to help in the meantime to help us cope with our pains.
Ring up and ask them for help, my experience is if you shout loud enough they will listen.
The very best of luck and I do hope you are soon on the way to resolving your health problems
Pam
x
 

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Discussion Starter #9
Thanks Pam,
I feel alittle better this morning, it's just so frustrating.
 
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