View Full Version : Not sure what to believe

08-11-2005, 07:55 PM
Ok, I went to my dr. about a year and a half ago - she said she suspected rheumatoid arthritis and sent me to a rheumatologist. As soon as I walked in the door the dr. was leaning heavily toward a lupus diagnosis.

Fast-foward to a year and a half later, my ANA has been positive 3 times out of the 4 times he's run it, and he seems to have decided lupus is the right diagnosis. But none of the other tests he's run seem to show anything and I'm not sure whether he's just going with the easiest answer.

I get canker sores in my mouth, I get so tired I literally cannot get out of my chair, my joints are pretty much swollen all the time, I'm nauseous at least once a day, and I have all kinds of weird food allergies (been vegetarian for 10 years because I can't stomache meat at all), my sinuses hurt 9 months out of the year, my belly can swell 2 inches in an afternoon and be back to it's normal size 2 hours later, every once in a while I actually go blind for a few seconds or lose partial sight in either eye (eye dr. says I'm fine), I get rashes all the time - especially under stress or if I've been out in the sun, I get tiny blisters that cover my hands by the hundreds - then mysteriously go away, I get dizzy spells that last for days, and heat can literally make me so weak I fall down.

As you can tell, life is just *%$%$ wonderful.

But my hair is getting thicker, I'm 40 but appear to be getting taller (???), and except for my cats and my sinuses have no other headaches.

Is this really lupus or should I keep looking for another answer?

08-12-2005, 04:45 PM
Katalanta, I always say that YOU are the expert on your body and nobody knows your body better than you. I'm not a medical person, so I obviously can't help too much with diagnosis, but I can tell you some of the things I have learned on my own journey. You do seem to have a lot of symptoms of lupus, but I have not heard about temporary blindness being related to lupus. When I was going through the initial phases of my illness I was working with a really good PA who suspected lupus or MS. When I talked to my rheumy about MS, she didn't think I had that because it also usually affects your eyes (blurry vision, or trouble seeing). I'm not sure if eye problems from MS can be detected by an eye doctor. There is no determining test for MS, but an MRI can be done to check for certain things in the brain.

I don't want to scare you by mentioning MS and like I said I am not a medical professional, I just wanted to share some of my own information I have gotten along the way. I guess the bottom line is that if you think there is something more going on with you, you should check it out and don't stop until you are completely comfortable with what your doctor has to say. This may mean switching doctors until you find someone you really trust. I had to do this with my 1st rheumy and I know others who have had to switch several times. Take care and keep us updated on how things are going for you.

08-13-2005, 09:37 AM
Are Lupus and MS exlcusive? Is it a situation where if you get positively diagnosed with one, you can rule out the other?

08-13-2005, 01:31 PM
I don't think the two diseases are exclusive. If I remember right, I have read about people having both. It is interesting that since I read your post last night I read something on another forum that described them as sister diseases - I guess because there are a lot of similarities between the two and they can both be difficult to diagnose. You might want to look up information on both diseases. I'd like to know what you continue to find out. I'm still not completely convinced I don't have MS because I have so many muscle tremors and some other symptoms, I just don't have any eye problems. Take care and keep all of us here posted.

08-15-2005, 03:53 PM
I would like to add that Antiphospholipid Syndrome has not been mentioned and this goes more often with Lupus and Ms is often misdiagnosed for APS. IT took me two years to get a diagnosed so as symptoms develop it might be easier for Dr to sort things out. I have APS as wellas Lupus and sjogrens. They are all part of the auto immune family and we can all get more than one of them, if we have the right genetic link.
Love Val

08-15-2005, 04:20 PM
Hoping that no one takes offense, but this just keeps getting better and better, doesn't it?


08-16-2005, 01:42 AM
My thoughts on this illness is we got what we have got and not to worry about what might be, enjoy today and understand the illnesss as much as you can. It may not work for everybody but it works--most of the time for me.
The local doctors do not understand our condition so we need to know our body ourselves.
I don't profess to know it all-- l but I try to live the best I can, if anybody feels down and wants to chat please feel free to buzz me on msn.
Acceptance is the biggest hurdle, it took me 2 years to get over that.
Its a struggle but what choice do we have but to keep battling with it.
Love Val

08-16-2005, 06:45 AM
It occurs to me that no one here actually sees me go through my daily life quietly and calmly, doing the chores, answering questions, soothing other people's fears - so you might think that I log off and scream all day.

Not the case.

I'm just venting here. In 3D, I'm doing what the doc tells me, taking the pills I'm supposed to take, letting people at work know that yes, I'm sick, but no, it's not going to be a real problem, telling my family not to worry, it's really just a weird kind of arthritis and everything's going to be fine.

Inside though, it's a very big deal. So thank you to everybody who has so patiently put up with my ranting. Fair warning: Unless asked specifically not to, I'll probably be doing some more of it.

08-16-2005, 07:59 AM
Katalanta, I think you have every right to vent and I think we all need to do it once in a while. I know that I need some validation once in a while from people who understand how much it stinks to have lupus and how much it changes your life. I'm like you. I do everything I need to in my daily life and people think I'm "coping" very well, but this has been so life changing and is a huge scary deal to me. I joined some lupus forums for some of the same reasons that you did - to be able to talk to people who understand what we are going through and can relate. I think it's all great that we are hear to help each other. Some people might be farther along than I am with my acceptance of having lupus. Some days I feel pretty calm aout things other days I'm scared to death, other days I'm angry and a lot of days I'm full of grief. I came here for support and validation for me feelings as well as to support others. I hope that most people who post here realize that we all need a place to share our feelings and thoughts. As far as I'm concerned you can rant and vent as much as you want and I hope that others are understanding that we are all at different places in this journey through the wonderful world of lupus. Take care Katalanta and I'll be heare whenever you need a friendly ear.

08-17-2005, 02:06 PM
I have also been having some vision issues... Over the past 4 months I've had three spells where I've had like "sun spots" in my vision... Then it goes all white and I can see shadows and stuff moving, and then it will go completely black for a little bit... Then, a little more frequently, I will have periods where it will be like someone shined a bright light in my eyes, and while I can see around it, the residual light stays for a while...

I didn't think anything of it before recently (the past week or so) when I've had to literally squint to see sometimes... Now, there seems to be a little bit of light residue in my vision all the time... And I don't know if it was always kinda like that and I just didn't pay attention (because I've never REALLY been the type to pay attention to what is going on with me, unless it's MAJOR) or if this is just a recent thing...

Also, I seem to be having trouble focusing on things and my eyes will go blurry for a few seconds at least once a day...

I'm starting to feel like a hypocondriac here!!!

Is any of this the kind of vision problems you are having??

08-17-2005, 02:25 PM
Yeah, it sounds about the same. And I'm not the type to pay attention either. What got my attention was when I went completely blind for a few minutes. Not sure exactly how long it was. I kept expecting to be able to see again any...second...now...now...now...NOW...

Anyway, after that I began noticing that my vision would stay blurry for days and that I'd get that sunspot effect I think you were describing where without being exposed to a light source I was aware of, I'd suddenly realize that there was a black circle covering the upper right corner of my left eye - and it would stay that way for sometimes an hour.

It doesn't happen often. Which is good. And so far it hasn't happened while I was driving. I told the rheum. and regular dr. about it and they both said - Oh, must be an MS, here's a referral to a neurologist. And I thought - ok, MS instead of lupus, fine, one seems just as bad as the other. But the funny thing was (and I did laugh quite a bit about it) I set up an appointment with the neuro. and on that very morning - the only road into town washed out and has yet to be repaired. I've found other ways in to get to work, etc. but I somehow haven't gotten back to the neuro. During the time between then and now I came up with a butterfly rash on my face and the rheum. has confirmed again that he thinks I've got lupus.

I'll deal with it, whichever way it goes, but having both MS and lupus doesn't feel like something I could handle right now. Plus, I did some research on lupus and found a site that said sometimes in lupus patients the optical nerve can swell and cause vision disturbances. So, I've decided to put off the neuro for another year or so simply because I don't want to add ANOTHER doc onto the roster. I'm having a difficult enough time avoiding the two vampires I've already got after me.

08-17-2005, 02:36 PM
Yeah... I don't think I could blame you for not being able to handle that... But, I wonder, (for your sake as well as mine) since lupus can attack the brain, too, if that could possibly a symptom of that? Are you on medication for Lupus? I also wonder if that could be a side effect of meds...

How often do you have the actual BLIND spells? And have they become more frequent or have you noticed? Have you noticed any patterns as to WHEN it happens?

08-17-2005, 02:45 PM
I've had 2 completely blind episodes, but one I can blame on a fire ant. I got bit by one of those suckers and went blind for a few seconds. That was about 2 years ago. The second spell was the one I described in the earlier.

At the time of that one I was taking celebrex as a compromise with my rheum. I didn't want him prescribing meds for any condition I wasn't absolutely sure I had - and he could physically prove to me that my joints were swollen. Of course, just after I started taking celebrex they pulled Vioxx off the shelves...

Annnnyway...I asked him if the blindness could be a side-effect of the medication and he laughed and said no. So that was one thing down. I was kind of freaked, though and went off the celebrex in favor of Tylenol. And I've had three or four episodes since then with the spots in my eyes and two particular cases where the blurry vision went on for more than a day. That does seem to be increasing to me, but I'm not absolutely sure. I do remember being 13 and having blurred vision for days and my mom told me not to worry about it - so I really haven't paid attention to it at all.