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Discussion Starter · #1 ·
Hi everyone. So I am not diagnosed with Lupus. My symptoms are rash on face (looks like butterfly but am being treated for rosacea w/no improvement), hair loss, dry eyes and mouth, difficulty swallowing, joint pain, Raynauds, heart palpitations and pain when taking a deep breath, and fatigue. Dermy ordered an ANA panel, came back positive w/centromere pattern, but no signs of Crest. I am seeing a rheumatologist on Oct. 7th. So that's my story...relieved to have blood work that may explain the joint pain that never ends. My mother-n-law has lupus and my husband is very concerned. Thanks for listening everyone :)
 

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Hi and welcome to the site, it is a great place to find info and support. Not long to wait till your rheumy appt. Have you got a list of symptoms and photos of any rashes etc? This can be useful. I hope your appt goes well.

Take care

Deb
 

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Discussion Starter · #3 ·
Yes I have pics...my driver's license photo (about 12 yrs. ago) and my passport and then other pics taken recently. I've attached a couple of pics to this post. I was glad to be able to get in and see the rheumy so soon. Thanks for your reply :)
 

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Hello :)

I would be rather surprised if you don't get a diagnosis of autoimmune connective tissue disease whatever it might be called, although the specialist might want to conduct further tests before formalising the diagnosis and starting treatment. That's especially if all the antibody tests haven't yet been done and often they prefer to re-run the lot anyway.
As you may know, CREST is simply the acronym given to a particular constellation of symptoms: calcinosis, Raynaud's esophagal dysfunction, sclerodactyly and telangiectasia. The term isn't used so much these days for some reason, perhaps because it is not viewed as a separate entity in any useful sense. Manhy cases of CTD are not typical and the symptoms don't fit neatly into the little boxes labelled 'diagnosis'
You apparently do have two of the 5 items, the 'R' and the' E'.

If the supposed rosacea hasn't responded to treatment, that suggests it isn't rosacea. It's not quite clear from the photos if the naso labial folds are affected. If not, that would support a STD link because those are areas relatively protected from the sun. Same with those folds running down either side of the mouth. A biopsy can be ordered if there is any doubt.
It would be some coincidence if you turn out to have a similar sort of disease to your mother-in-law! I hope you and your husband realise that each case is different with people being differently affected both as to symptoms and severity and disease not necessarily progressing. So much depends on getting speedy, effective treatment and pure luck. Ask about pain relief even if the doc wants to wait to prescribe disease modifying drugs. A short course of Prednisone can help through the initial period or longer until other meds start taking effect. Emphasise how your daily life is being affected by giving practical examples.

Bye for now and good luck ! :)

Clare
 

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Hi im also awaiting diagnosis seen your pikkies.
wishing u well for your appointment very simlar symptoms to yourself along with constant inflammation for me.
lv countrylass
 

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Discussion Starter · #6 ·
Hey thanks for all your replies. Hope things go well for you countrylass. I hope you'll let me know how things turn out. Thanks Clare for your reply too. Good info. I do take piroxicam for the arthritis pain...but it has little effect overall. Take care everyone and I look forward to talking to ya all more. :)
 

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Can't wait to hear what the doc has to say! I bet you will be so relieved to have a diagnosis!! Just try not to focus too much on how scary the diseases sound. A disease's course is impossible to predict because it varies so much from person to person. Your mother-in-law's lupus is not your lupus (if that's what you have). However scary-sounding or benign-sounding your diagnosis is, you're already living with it on a daily basis. The worst part is over!
Good luck to you!
 

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Hi u welcome i will

so far i been diagnosed as having photo sensitive butterfly rash,constant inflammation.multiple fiborids.tennis elbow.
all best to u to countrylass
 

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diagnosis

Hi, good to meet you, I too am awaiting diagnosis, have the butterly rash, fevers, fatigue, feet and ankle pain etc., Wont know until January at my next appt with rheumy. Take care Barbara
 

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Discussion Starter · #10 ·
Wow

Hey Wow that is a long time to have to wait for your results! I know so many people have to wait forever to get in and see a rheumy. I feel fortunate. My appt. is tomorrow so I am looking forward to starting the process to find a diagnosis. My facial rash is really flared up so it will be interesting to see what he thinks. I wish you the best Barbs21 :)
 

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Good luck tomorrow at your appointment.:luck:
Glad your rash is showing up again. That sounds funny but you know what I mean.:wink2:

Please let us know how your appointment goes.

Take care,
Lyn
 

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Good luck tomascik :)

Whilst you are there, try and find out the numbers on your ANA test if you haven't already.

love
Lily
 

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Discussion Starter · #14 ·
Rheumy Visit

So I am home from my appt. Wow, that was exhausting. So many questions. But the doc looked at my facial rash..."Malar Rash" he said w/no hesitation. But of course they ran a hundred blood tests and urine and so that will be about 3 weeks. He said it could be Sjogrens, or Fibromyalgia, or Spondylolisthesi (?) and blah blah blah...or more than one...but with the rash and its appearance their first guess is Lupus. So I had knee xrays done (they are full of fluid, very little pain though, only if I turn them wrong) lumbar spine, and SI Joints xrays. I asked about the specifics of my ANA panel that the dermatologist ran but they didn't have the exact numbers...just a note that it was high but not off the charts. And of course it doesn't matter because they re-ran all of that and like the doc said, they treat the patient and the symptoms and the ANA is only part of that. So I go back in two weeks...hopefully all the blood work will be back before then. I let my husband know (which I dreaded) because his mom has been very sick with Lupus for many yrs, but tried to reassure him that every case is different. So that's it all in a nutshell...thankful for some answers...take care everyone :blush:
 

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That sounds like an excellent appointment :) and great that you're back so soon.

And yes, it is important to remember that lupus is extremely individual and every case is different. You just need to take it one day at a time.

Katharine
 

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I am glad that they were so thorough. This is the tough part, waiting it out on the results...........but it sounds like you had a good appt. and that's something to celebrate. Take care and let us know how it turns out.

love
Lily
 

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Hi, I agree with the others, it sounds like a very good, thorough appt. The waiting is the hardest bit, two weeks isn't too long though. I hope the results mean you can get some treatment to help you.

Let us know how it goes.

Deb
 

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Discussion Starter · #18 ·
2nd Appointment

So I am off to my second visit with the rheumatologist today. I am hoping all my bloodwork will be back, although they said three weeks and it has only been two. All my xray results willl be in though. I really hope they will change my pain medication. I am only taking piroxicam (20 mg) in the morning and by lunch time it is all downhill from there. I will let you all know how things go ;)
 

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Good luck today, Itomascik36
 
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