Just a question

[kimpope08]

Hello, I was hoping that someone could help answer a question. Years ago I had several miscarriages in a row. After the 3rd they did some testing and told me that I had a positive ANA test and referred me to a rheumatologist. He told me that since I didn't appear to have any of the other symptoms (don't know where he got that from... except that he couldn't see a butterfly rash) I didn't have Lupus.

For years since then I have suffered from bouts of "flares" of something. Extreme fatigue, hair loss, what looks like a butterfly rash... especially after the sun (but couldn't that just be a sunburn?), very sore joints, etc.

Recently, the hairloss has acellerated (even loss on my pubic area), my joints go thru periods of extreme pain (especially my fingers, wrists, hands, elbows and knees), muscle pain, I developed headaches that only go away when I'm sleeping or laying still (for over 3 weeks straight now), and when I'm in the sun I get these raisin to dime sized sores on my arms, hips and thighs (they are red in the middle and are scaly). I showed my doctor and she said "you have photosensitivity". I've also developed a couple of areas that get blisters on them and then they turn a little harder and scratch off and leave a wound (sorry if TMI). I also have had alot of gastric distress... pain like gallbladder pain - only I don't have a gallbladder, gassy, constipated, etc. Last night I had an anaphelptic (sp?) episode and was told I was allergic to carrots... I've eaten carrots my whole life and never had a problem! Can new allergies be a symptom?

Anyways, I'm so tired of feeling like this. I have 9 children and life has to go on. I never feel like I get enough sleep. I'm on antidepressants because I was so depressed. I don't have insurance, so seeing a specialist is difficult.

Someone already asked this... but a little differently. I tested that once positive ANA, but have been tested again a couple of years ago and it was negative.

Also, when I was a teenager I was told that I tested positive for a sexually transmitted disease but had not been sexually active AT ALL.

I know this was alot to read... thank you if you made it this far! I also know how a previous poster felt when she said she didn't want her doctor to think she was a hypachondriac. I told my doctor my symptoms and she said "it's just because you're losing weight (I'm on a diet)".

So, can you test positive once, have the symptoms and then test negative another time?

Thanks in advance for your help,
Kim

[AngeK]

Hi Kim

Sorry to hear you had such a hard time, it sounds like you haven't had much luck with doctors!

The problems you describe can all be associated with Lupus, joint pain, fatigue, depression and sun sensitivity, etc. ANA results tend to vary according to how active your Lupus is, I initially presented with a relatively low postive ANA, this had shot up at my last appointment to a pretty high positive. You can also test negative for ANA and still have Lupus.

I have also read that people with Lupus can have false postives when tested for syphilis. People with Lupus also seem to have more problems with allergies.

Repeated miscarriages can also be associated with a condition called Hughes syndrome (APS). This is a blood disorder that makes blood thick/sticky and in the UK has been indentified as one of the major causes of repeated miscarriages. It's a condition that can be associated with Lupus.

I would try to get refered to rheumatologist with a good knowledge of Lupus, I presume you are in the U.S. in which case people from the states who use this may have more info on how to do this. At least this way you would have a better chance of finding out if you do have Lupus.

these sites have more info on lupus symtoms etc.

http://www.lupusalliance.org/
http://www.lupus.org/
http://www.lupusuk.com/
http://www.lupus.org.uk/
http://www.nlm.nih.gov/

Hope this helps.:)

Angela

[peonyprincess]

Kim,

Sounds as if you are dealing with alot of different worries and you have alot of questions. I will try to answer them as best as possible.

1. First and foremost you get the Mother of the Year award for having 9 children!! I have 4 and I thought that was alot!!!:lol:

2. You asked about your allergy to carrots. Yes, you can develop a new allergy at anytime in life. There have been many people who have taken a certain medication or ate a certain food that later in life they develop an allergy. Sometimes it isn't exactly an allergy, but that that particular item doesn't mix well with medications. Always pay attention to a new allergy or any for that matter. Always be sure to right it down somewhere that is easy to locate.

3. ANA's can fluctuate. They will not necessarily stay positive. That is one reason why it is difficult to diagnose Lupus. There are some docs that rely on test results only to diagnose. There are some people that will always have a positive ANA but will never develop Lupus.

4. As for testing positive for an STD.....I am sure that was a shock for you. Since you had not been sexually active, it would be a little difficult to test positive, so there could have been one of two things that occured. First the test results were not correct (either mixed up with someone else or not ran properly) or the second problem (which I have also seen) is that you were exposed to that particular STD while in utero....in other words, maybe it is something your mom had and it was passed on to you.

5. I am not sure of your financial situation, but I would think that with 9 kids you would more than qualify for public aid. While no one really wants to be on it, it does help a great deal when purchasing medications and getting doctors appointments. The program was established for people that was having a rough time of it, take advantage of the program, that is what iit is there for.

Continue to search this site for information. Also surf the net for more information if you cannot find the answer here. Ignorance of something is not an excuse. Take advantage of the information that is out there so that you are well prepared when visiting your physician.

Good Luck



Nancy

[Clare.T]

Welcome to the forum, but I am sorry you are so unwell.
The one time positive ANA and the miscarriages could be relevant to diagnosis as part of your health history, although the ANA is not a specific test for lupus.

The false positive STD test was presumably for syphilis. That could be highly relevant to the miscarriages and to a lupus diagnosis, or an APS diagnosis - that's the clotting condition already referred to. If you look at the ACR criteria, you'll see it's mentioned along with anticardiolipin and 'lupus' anticoagulant tests as a possible criterion.

People with lupus are said to have more allergies than the general population, but there are far more weighty symptoms and signs. I looked to see if carrot allergy might mean reaction to similar types of foods but didn't see anything obvious . If I were you, I would check that out very carefully !

In your place I would do everything within my means to get tested in the hope of feeling better. You do mention a number of symptoms that could well be lupus elated - the skin problems could be especially important becuse if they can be shown to be lupus specific then you have some sort of lupus. Of course there might be other diseases with very similar symptoms involved too, like hypothyroid.

The comment about feeling unwell because you are on a diet is just silly in my opinion , a brush off, unless you are on some crazy sort of diet.
Ask for an ANA test and also get urine checked - kidney disease doesn't have obvious symptoms until is advanced

I can't help with health care availability since I am not American. Maybe a separate post on the 'Living with Lupus ' section would prompt specific suggestions.

We'll help you all we can to get some answers so don't hesitate to ask.

Wishing you lots of luck !

Clare

[kimpope08]

Thank you all so much for your info. It's very frustrating to feel guilty for asking a doctor to help you figure out why you feel terrible!

The info you provided gave me the push that I need to be a little more assertive with my doctor. I don't think Ive ever mentioned the false positive on the STD to her before and I realized I probably need to after reading some of the links you guys posted. It's difficult because I only feel bad for periods of time, if I am not able to get in to the doc while I feel bad... she doesn't think I "look" bad... so there must not be a problem.

I guess it's on to my quest for an answer! Somehow I just think it would help to know WHY I feel the way I do.


Oh! One more quick question... or clarification. Soooo, should the test results coincide with how I'm feeling? I mean... if I'm not always going to test positive...., but do sometimes... is it more likely to be during the time that I have the other symptoms? Did that make sense?

Thanks again everyone!
Kim

[Lily]

Hi Kim and welcome :)

When I was in the diagnostic stage my bloods were all over the place. There were times I felt really good and got a positive ANA, and other times where I felt really lousy and it came back negative :hehe: It can be a bit like that especially when the disease is establishing itself. What helped clinch it was testing every few months, and that was done once I saw a specialist with all my symptoms.

Good luck and yes do push on for answers. Hats off to you with 9 children too :) thats some achievement and you are right to look out for your health, and demand some answers to your problems. With the answers will come the correct medications and that should make a big difference to your quality of life :hugbetter:

love
Lily

[gymcoach10]

I am just like Lily in that my ANA and other bloodwork was all over the place for three years- I think the criteria states testing positive at some time during the course of the illness- correct me if I am wrong there guys! Anyway, mine has fluxuated, and I am diagnosed w/ Lupus and secondary FM and Raynauds.

Pam