Lupus Support Group

I hope I'm ok to share my 'story' and ask for some advice. I'm feeling frustrated, scared and annoyed and no one seems to get it.

Ok a bit of history, I have asthma, celiac disease, hypermobile joint syndrome, raynauds and I was diagnosed with fibromyalgia and chronic fatigue syndrome but I've had this taken off me. When I was 8-9 I had unexplained aching, sore, stiff wrists. When I was 11 I was told I had synovitis in my ankles.

Im 21 years old and about 12 months ago I noticed this weird rash on my chest. Spotted it getting out of the shower, I asked my GP, she didn't know just said it was change of season.

about 10 months ago I started getting sore knees and swollen fingers. Then my knees started swelling and my fingers hurting too. I went back to the doctor, showed her my joints and my rash that was still there. She said eczema. She ordered some blood tests, ANA (1:80 speckled) ESR (slightly elevated) CRP and CBC normal.

about 8 months ago I started getting dry eyes and dry mouth. I also started getting ulcers in my nose and a few in my mouth. My joints were getting worse and I was tired all the time and had no appetite. I felt like absolute crap. Blood tests ANA (1:160 speckled) CRP and CBC normal.

about 3 months ago I got really bad. The rash I had on my chest was also on my face and elbow. My knees were so swollen I couldn't straighten my legs. My fingers couldn't make a fist or straighten. My joints were red, hot, sore, stiff, grinding and clicking. My GP was freaked out (I could tell, it was at my university student health where they're use to pregnancy tests and genital warts). She rung a rheumatologist and he said "it definitely sounds like some sort of autoimmune inflammatory arthritis. Give her a month course of prednisone and urgently refer her to a rheumatologist". That was all done and I had major relief while I was on the prednisone.

One week after coming off the prednisone I had my appointment with the rheumatologist. My first appointment went badly. She spent the appointment answering her pager and cellphone. She got angry with me for having gone on the prednisone and didn't believe my joints were ever swollen! I showed her the rash that was on my elbow (the same as the one I had on my face and chest) and she said it's just eczema, talk to your GP

She ordered lots of blood tests with all the special antibodies and stuff. Everything came back negative, including my ANA. This was 1 week after the Prednisone and my (new, because I'd had to move back home because I was so unwell) GP said she thought that the prednisone would have skewed my blood tests.

So I went back to the rheumatologist, appointment two. She said my problems were mechanical and emotional and sent me to a physio. I took some photos of my swollen knees for her and she said that I'd just angled the camera and propped my knees up to make it look swollen. My knees were red, hot and sore. My mum felt them when I'd taken the photos and she knew they weren't right.

So I went along to my physio appointment. She said to me "why are you here? You've obviously got something rheumatological going on. I can feel fluid under your knee caps". She told me I should definitely get a second opinion. At my second appointment she said she'd passed around her notes to the other physios and they'd all agreed that it was rheumatological and she'd been instructed not to manipulate me anymore and to strongly recommend a second opinion.

(thanks if you're still reading!)

So I couldnt get in with the last GP I saw so I had to see someone else. I went through my history (as above) and told her about how I'd been treated by the rheumy and what the physio said. She didn't hesitate to re-refer me and ask for me to see someone else at rheumatology. She said she could feel a little bit of fluid under my left knee and I told her my knees were ok but it's my shoulder that hurt the most at the moment. She felt my fingers and said that sue can feel bony nodules on my finger joints (no idea what that means).

Then I said to her that I have this rash on my elbow, the rheumatologist and other doctors have said it's just eczema but I don't think it is. She had a look and she said "that's definitely not eczema that's a vascular rash. They are very common in autoimmune diseases" she then said "the strange thing is I think because of this rash you'll now be taken seriously and I have no doubt this is autoimmune, I think you have Lupus".

She made me go and get more blood tests done (and the stupid nurse hit a nerve) about coagulation or something.

I have no idea what's going on with my body. I'm sick of feeling like this and I have no idea why and why my blood tests don't seem to show what all (except the stupid rheumatologist) think it is! I'm feeling sore and tired and I just want some answers!!

I can't get into see a new rheumatologist for 3 months!

Thank you for reading

Hi and welcome to the group. Lupus can be so hard to diagnose, each of us here would have a different story about how lupus affects us. Plus not all rheumys are educated enough about it. (As you have found out.)

Even blood tests don't always reflect how we are feeling. We have a few ANA negative people among us. It sounds like your doctor is maybe looking at lupus anticoagulant. It really doesn't have anything to do with lupus, but if you have it, you might be more prone to clot. They used to think only lupus people had it, now they know anybody can.

Sorry that you have such a wait for the rheumy visit. Could your regular doctor maybe put in a call for you? If not, it sounds like you did find a good doctor to help you through the next few months. Visit us often.

Alison

Post edited by: redhairali, at: 08/22/2011 09:19 AM

Thank you. I know it can be difficult to diagnose, I jut wish it was easier lol. I wish the rheumatologist was more helpful.. I hate feeling so terrible all the time! I have had a positive ANA in the past, but it's negative when last tested. The doctor won't re-test it. I'm not sure what Lupus Anticoagulant is, I'll google it. Does having it make it more likely that you'll have SLE?

My GP said she's making it as urgent as possible because of my vascular rash. But that could still be 3 months away.

Thanks so much Alison.

Hi paperbagprin. Your ANA had been positive when you were flaring, but you were given prednisone to suppress the inflammation, which caused the ANA level to drop below 1:80. Perhaps you could wait till you next flare again, don't take any prednisone or immunosuppressant, then ask for a referral to a second rheumy. Your autoimmune panel may test positive for an autoimmune disease this time.

Thanks Loopie, yes that's exactly what happened. When I was flaring it was 1:80-1:160, but after the Prednisone it's negative. I've got my referral now, but it's going to take at least 3 months until I can see a rheumatologist. I'm feeling terrible now, my joints hurt, I'm tired and I have ulcers all through my nose, my eyes are dry and I could sleep for a week!

Thanks.

Hi paperbagprin....welcome to this fantastic support site...as you can see we have some wonderful, caring members here. We all have stories to tell and most of them sound similar to yours. It does sound like you have some kind of autoimmune disease going on. I would definitely seek another Rheumy and keep on going....don't give up as you will get an answer to this. I am ANA-negative Lupus but my Rheumy is wonderful and doesn't just look at labs alone.....she reads the whole picture....she looks at me, examines me and listens to me and also looks at labs......it took a long time for me to get an answer to my Lupus but I didn't stop.....this is your body and you know something is wrong...this is not normal....it can take time to get a proper diagnosis of Lupus......once you get that diagnosis than the treatment can begin. Anytime you feel the need to vent, or just to ask questions please feel free to post often. I wish you all the best...please keep us posted.

Eva

Hello and welcome I'm so sorry you are having a rough time going through the diagnosis process! Lupus can be hard to diagnose, it is a tricky disease for sure. We do have members that are ANA negative, but sounds to me like the prednisone suppressed the result. Is there any way your GP would put you back on prednisone so you can get some relief?? Might also be good to ask for a referral to a Pain Specialist, I couldn't live without mine!

As far as I know my ANA has always been positive. However, my other labs didn't show flaring for quite a while but I was very sick during that time. We can definitely be in a flare without the lab work showing it. Blood work alone is not relied upon to treat Lupus or to diagnose it. The rheumy she do a thorough physical exam and review all your medical records in addition to blood work. I'm glad you are going to get a 2nd opinion! I hope you can somehow get the appointment moved up. Does the office have a cancellation list they could put you on? Maybe your GP could send a letter of introduction emphasizing the urgency of your case? Please keep us posted and I hope you feel better!

Take Care,

Amy

Wow, what a rotten rheumie! I'm glad you are going to be seeing a different one. Three months does seem like a long time, especially when you're hurting so much but the appt will be here before you know it. My question for anyone/everyone is, do all of you have the 'butterfly' rash? My rheumie says I don't have Lupus because I don't have the rash. That was a few years back and of late, I've been getting all kinds of rashes-quickly been told it is dermatitis by my derm who was leaving at the end of that day so he was in a hurry to get out so he didn't spend any time looking at it. I've been having sores in my mouth, rashes, etc. I have problems swollowing-end up choking many times. I did yesterday on my way out to the car. Ended up spitting out my water because I could not get it to go down and I started to panic. Anyway, I'm blabbing. I really just wanted to know about the rash. Guess I should have started another topic.

paperbagprin,

What that first rheummy did to you was inexcusable. The telling point was that she got angry with you for going on the prednisone-as if you, a non-doctor would know about medications. Absolutely inexcusable. If it helps, a "Hospital Intake Specialist" told me that certain doctors will go on the attack, so that a patient will not report them. That same Intake Specialist was very ill a few years ago and got to experience this personally. It is a dangerous practice.

I, like everyone else (it seems) was passed around from doctor to doctor and dismissed each time as being the "H" word......as in being just another "Hypochondriac". Ironically, there really are not that many hypochondriacs out there. Not once in 12 years did anyone mention or test me for being autoimmune. Things have changed but I recently read that the most valuable skill a doctor can have is to listen to their patients........and keep listening each and every time because......well, I kind of think of it as detective work, where each time the more and more is revealed or something crucial that has been forgotten is now remembered.

I figure that you already know that you've done nothing wrong.........but I also figure that when you're feeling lousy, you can never have too many people who care about you.

Re: Your rash.....I don't know if laying a cold compress on the areas that are bothering you would help but it does wonders for me. I have Rosacea on my chest and have been given Finacea, which I like but cooling down the area acts like a preventative. Before I get out of the shower, I just turn cool/cold water on the area and have found that Cetaphil is the only cleanser that doesn't irritate it.......a friend of mine who has excema can only use Cetaphil, so I thought that it might be safe for me.

You sound very ill my dear and deserve to feel so much better. Kuddos for your perseverance, it's a hard-won skill but a valuable one......

Be well(er),

Cali

Post edited by: SomewhereInCalifornia, at: 08/25/2011 01:04 AM

Thank you so much everyone, your support means so much more than I can say. It's easy to start to think you're a hypocondriac.. But I remind myself that there are over a thousand places I'd rather be than going from doctor to doctor. If I wanted sympathy there would be better ways to do it..

She was a terrible rheumatologist and she made me feel even worse. She called my rash eczema, when the GP I saw (who I found out is actually a trained dermatologist!) said it's a vascular rash. My GP last night agreed that it wasn't eczema and that I wasn't getting anywhere with that rheumatologist. She said that she thought the rheumatologist had already made up her mind and that she's not going to help. My GP made a new referral to a private rheumatologist. It's going to be pretty expensive, but I get an hour long appointment and my GP said "I have referred people to see a private rheumatologist and they've all said it was money well spent".. So here's hoping!

I'm seeing a new rheumatologist on Wednesday, I'll update then

Thanks again everyone, I really appreciate your support.