[jandmsmom]

Hi Everyone!

My name is Dale and while still waiting the "official" confirmation by a Rheumatologist, my PCP is pretty sure that I have Lupus. So here is my strory so far...I developed a wierd rash on my calf. Went to my PCP who said that she had no idea what was causing it and wanted me to see a specialist ASAP. I saw a dermatologist who specializes in skin disease who said that it was strange and that I should have a biopsy. I did and the preliminary results came back positive for homogenous something (I can't remember) He then sent the sample for a "stain" which also came back positive for homogenous something. He told me that he suspected Lupus and that and ANA would be in order. The results were 1:1280. Based on this information and the fact that I am tired all the time, have joint pain in my knees and ankles and have other various symptoms, both my PCP and my dermatologist think I have Lupus. I want to know what the "girls in the know" think? They have done more blood tests and also a urine test and I have a appointment to see a rheumatologist on Friday. I lookedup the "Lupus chart" and I don't meet all the criteria listed..I only have 2 maybe 3 things on that chart and it says that if you can't meet at least 4, then you don't have Lupus. What do you guys think??

~Dale

 

[x_claire_x]

hello

Hi Dale, I am glad you are seeing a Rheumatologist on Friday, He/she should be able to run some more tests but it can take some time to get a diagnosis.
I hope the Rheumy you are seeing is informed about Lupus, just in case!
I started with symptoms five months before a 'flare'.. first one, that put me in hospital...I only had a few of the criteria before the flare up, and indeed had a very impatient husband questioning why they couldn't figure out what was up and diagnose, treat me sooner... but sometimes these illnessess have to be watched for a while and assessed, though there are numerous examples of people suffering for years but not being diagnosed when indeed they had all the symptoms etc but not a knowledgeable Dr.

I hope they have run auto immune antibody tests ready for your consultation and that your care will be monitored to help with your symptoms and to ultimately explain your pain etc... I wish you all the best and won't ramble on any more!!
XClaire

 

[Katharine]

Hello Dale,

It sounds like you have a good PCP there!

With those biopsy results and such a high ANA titre it definitely needs further investigation and the rheumy is the right doc for that.

Lupus and other auto-immune diseases can be very complex to diagnose and it can sometimes take time to know exactly which disease is the problem but it sounds as if you are well on your way to some results.

The rheumatologist should want to take a very complete history from you. Reading through the diagnosis criteria and the "alternative" diagnosis criteria will help you realise the things that are worth mentioning that you might not have thought of. The rheumy will also run a complete panel of much more complex blood tests. The ANA test is more of a screening test for autoimmune diseases (though that very high titre is quite indicative of lupus) and there are other more specific tests for lupus and other auto-immune diseases.

If you have any photos of rashes that you have had, remember to take them to the rheumy too. They have a bad habit of clearing up just the day of the appointment.

Good luck for your appointment and bye for now,
Katharine

 

[Clare.T]

Welcome to the forum Dale!

That list of ACR Criteria was meant to describe all the forms lupus can take so as to decide what they are going to call lupus, as opposed to other autoimmune connective tissue diseases. It is for classification and is only a guide to diagnosis.
Some of the criteria are more weighty than others. Lupus specific skin problems, proven by biopsy, mean that lupus is present in some shape or form possibly limited mainly to the skin. It remains to find out if it is affecting the person in other ways. An ANA that high also serves to indicate lupus rather than the many other conditions that can cause elevated ANA's.
The further blood tests might show other indications of lupus either other antibodies or other abnormalities, such as anemia.

Lupus affects people very differently, both the symptoms they experience and the severity of those symptoms, so don't jump to fearing the worst case scenarios. Most people with lupus lead pretty normal lives with their symptoms well controlled. They don't post on forums because they have no problems

I suggest you make a thorough health history leaving nothing out and note what chronic or recurrent health problems close blood relatives have had. Even ob/gyny problems could be relevant. It's amazing how often people realise that what have seemed passing health problems for years before diagnosis were probably due to unrecognised lupus.

Also get copies of your blood test results after you have seen the doctor. That way you can get to know your lupus as well as making sure all the right tests have been done. Good doctors appreciate informed patients and you can then build up a partnership for your health care. Information empowers and dispels fear.

There's a wealth of information as well as understanding support here so don't hesitate to ask for advice. We'll do all we can to help you. Let us know how Friday's appointment goes.
Don't wear nail polish or makeup, or take it off before if you do.

Remember that a lupus diagnosis is not the end of the world and the sooner it is diagnosed the better.

Bye for now

Clare

 

[onetay]

Dale,
You may only have 2 or 3 of the things on the list but you have something going on and it is important to find out what is going on with you. It sounds like you are on the way to an immune problem maybe not lupus or maybe the beginning stages of it. I am not a doctor and that is the only one that does count these days. I would keep a journal of what is going on with you and share that with your doctors at appointments. This will help you remember what is happening and when and help the doctors with dxing what is going on with you faster.
I hope you feel better soon and that you get the help you need to feel better soon. You should keep us updated as to what you find out please.

 

[LolaLola]

Hello Dale, You do seem to be somewhere in the Auto Immune Ball Park.
Good Luck for your appointment and hope you will feel better soon.
Also Welcome to the site.
x Lola

 

[jandmsmom]

Wow! Thanks for the responses and support!!

First of all, THANK YOU so much for the responses and support. I am just getting started on this journey and it is very nice to have people to talk to that really understand what I am going through. I am still so unsure about everything. Although I am having symptoms, I am conflicted because being overweight, I can easily find reasons for the symptoms that I am having. For example, I have joint pain in my ankles and knees...that could be explained by being overweight. I am tired alot...that could be excess weight. Although I will say that my weight has not fluctuated and the fatigue has gotten progressivly worse. Anyway, I guess I am just nervous because Lupus is such a hard disease to diagnose and I am not a very patient person LOL. If something is wrong, I want to know now...not a year from now. With the positive biopsy and the high ANA, I am hoping that I will be easy to diagnose (wishful thinking I know LOL!) and can get on with some kind of treatment. I think I am going to reschedule my Rheumatology appointment for Friday because in preparation for the appointment, my PCP ordered a battery of tests, the results of which will not be ready by Monday. I don't know what was ordered but the results take at least 10 days to be ready. I would rather be able to present a little more information to the expert while I can. I think I will try and see him on Monday of next week. Anyway, thanks again for the info and support...I REALLY aoppreciate it!!!

~Dale

 

[Clare.T]

Hello again
Write all health issues down and leave it to the doctor to evaluate them!
Lupus isn't always very hard to diagnose and as I said biopsy proven lupus skin and an ANA that high certainly indicate some sort of lupus. Some of the symptoms such as fatigue might be due to anemia, either related to the lupus or another separate cause.

I was diagnosed in about 5 minutes from skin appearance confirmed by biopsy. This was decades ago when good information was limited and hard to access. For 26 years I was told it was only my skin affected, and that my joint problems and fatigue were due to poor life style habits and being overweight.
Not so! As soon as I got on effective treatment for my skin the joint problems and fatigue disappeared.

That won't happen to you because knowledge about lupus and especially skin lupus is far more advanced - like night and day - and also because you have the support of this forum where you can get all the information you need to get the best for yourself.

By the way, did the dermatologist say exactly what sort of skin lupus you have ? The lower leg is a rather unusual place to have the better known sorts.

Bye for now
Clare

 

[nicky00]

I've seen plenty of overweight people who have oodles of energy and no joint/muscle pains.

Its much easier once a diagnosis of lupus is made and you get the best treatment to eventually loose weight I found. Not the other way round.

Somehow I still thought they would look at my weight and be biased against the fatigue i felt..

Good luck with finding out

 

[jandmsmom]

Thanks girls!

The information you have provided is very valuable to me. I guess now I just have to wait and see what the Rheumatologist says on Tuesday. I am nervous and scared but feel like whataver the outcome, at least I can start doing something about it. Again, I want to thank you all for being so nice to me...it is REALLY nice to be able to talk about this with people that have been there...done that!

Thanks again and I will keep you updated!!

~Dale

 

[Nutty]

Hi Dale,

I had that same problem being diagnosed...not meeting the 4 criteria. What my rheumatologist said is that only means I would not be eligible to be included in a study. Her idea was to treat what she saw as the symptoms. She did, luckily, and since then more symptoms have developed. It's been 3 years now since my diagnosis and some of the symptoms have only come out in the past year or so. So, hopefully your rheumatalogist will respond the same way and treat your symptoms.

Annette

 

[jandmsmom]

Hi Girls...

Just a brief update...I have an appointment with a Rheumatologist on Tuesday and I am hoping to get an answer. My blood work should be done by then (crossing fingers) so hopefully he will have loads of information to look over. I did get my UA result back and it was completely normal so that is good. I did have a question...once they determine that it is Lupus, how to they then determine if it is organ threatening or not. Is there a special test or something.

THANKS and HAVE A GREAT DAY!!!

~Dale [/FONT]

 

[Clare.T]

Hello

Good about the urine tests ! Doctors determine how lupus is affecting you from finding out the cause of the symptoms you have. Sometimes there might not be symptoms experienced by the patient but blood and urine tests will show up areas of concern, such as kidney disease, either very real that need treating at once or which risk becoming problems and deciding at what point they need special treatment

There isn't any surefire way of knowing how lupus will develop in an individual. "The only certain thing about lupus is its uncertainty" There are a few statistics, such as if there is going to be serious organ involvement it usually takes place early on; it is thought that people with ds DNA antibodies are more likely to develop kidney or CNS problems; one third of diagnosed people improve that is disease activity lessens, one third stay much the same and one third get worse.

The most important thing is to have regular check ups even when the disease is controlled or in remission, be aware of any changes in health and be prudent in life style, such as do not bake in the sun or use tanning parlours.


Clare

 

[jandmsmom]

Thanks Clare!

I am really anxious about the blood results but am certainly encouraged by the UA results...I guess I will just have to wait and see and cross my fingers! I hope I get some solid answers on Tuesday! You have been a big help...THANK YOU!!!!

~Dale