[mathers]

Hello
I was wondering if I could get some opinions. Fifteen years ago (early 40's now) I went through a bout of terrible fatigue, weakness, weight loss, etc. A number of tests were done, including an ANA, which was 1:320 speckled. I saw a rhemy, who said she "didn't think you have Lupus" and since I didn't have any significant inflammation, prednisone would do more harm than good anyway. Since then, I feel like my health has slowly been slipping. I have given up drinking, I eat right, (never smoked) take vitamins, etc, yet I still have bouts of severe weakness, depression, ulcers, rashes. In the last 3 years, my fitness has gone down. I can't lift much or I will pull muscles and need NSAIDS, I can't exercise much or I become very fatigued. Last three years I've had shortness of breath in hot and cold weather, treated with inhaled steriods. I had pulmonany testing which revealed obstruction. In last year years, I've had three chest infections and chest pain following chest colds. Last one my GP suggested prednisone as a horse's dose of inhaled steriods were not helping. I find it very difficult to recover from any virus, it takes weeks. I mentioned the tests I'd had earlier to my current GP and he said "you don't have Lupus, you don't get rashes." I said I do get rashes (malar-like, but not as red as I've seen pics of) but he said "not like that." He thinks the breathing issues are Asthma, even though salbutamol doesn't help the shortness of breath.
I'm quite convinced I have Lupus, and I'm finding it very hard to work full-time, especially for weeks after a virus/lung infection. Any thoughts advise would be much appreciated.

 

[Joandublin]

Hi Mathers

Welcome to the Forum. Im really sorry to hear how you have been treated by your GP. I dont know how he can say with any degree of certainty that you dont have Lupus. Many people with Lupus do not get rashes. Some get very mild forms of redness (I get a red blush on my face, chest and neck). Others get no rashes. Your GP, like many others, is clearly not knowledgeable on this disease.

Your original ANA titre is significant enough to warrant ongoing investigation. On what basis did that Rheumy say he didnt think you had Lupus? Did he do additional blood testing? Did he follow you up with further appointments? From what you wrote he did not say you DIDNT have Lupus - just that he was unsure. That should be enough for a good GP to warrant follow up on the presentation of additional symptoms.

It certainly sounds to me like you need a rheumatology referral urgently and preferably one who specialises in Lupus. Where are you from? If you tell us what part of the world you are living in, some members may be able to recommend a specialist for you.

If your GP is not willing to refer you or investigate the possibility of an autoimmune problem then I think you should look to see someone else if thats possible. Many people with Lupus have been left for years suffering with seemingly unconnected problems and ignorant GP's and you shouldnt allow yourself to become another statistic.

I hope you can assert yourself with this GP and insist on a referral. You could ask him to run another ANA test as a first step. If he is unwilling to do this then I would seriously consider changing GP's or seeking a private referral if you have the means to do so.

There are other autoimmune conditions which could be the underlying cause of your symptoms so please keep an open mind on this. Only a specialist in this field can determine what is going on with your body.

We will help in any way we can so please ask any further questions.

Take care for now
Joan:rose:

 

[Pink Pearl]

Everything Joan said!

I was misdiagnosed for decades as I am one of the few who did not ever develop ana's. My GP wrote me off with sle for that lack, but tested several times for ana's. When I finally got a rheumatology referral, and all the labs were in, I definitely had lupus and most likely had it 20 years before that too, possibly going back as far as 30 years prior. My initial lupus symptom at age 5 was migraines. I also got very ill if I was out in the sun for a long time and/or got over heated. Now, I realize that those rashes were most likely lupus. My first cousin also showed identical symptoms starting at age 5. Our lupus mirrored each other, but it hit her heart and did me with lung damage. She lost her battle at age 36 from her 10th heart attack. She was 11 years younger than me. When I finally got her in with my rheumy, and hearing her history, he gave a dx of sle without even having any blood work in.

Your having lung issues concerns me, as that was one of my final defining symptoms, and would add that you might want to look into a pulmonologist who has experience dealing with autoimmune diseases as well. Lung problems are nothing to mess with and you most definitely need more specific care than the GP is giving you.
Good luck,
Sally

 

[LolaLola]

Mathers, If you have lupus or a lupus like illness a good first treatment would have been Plaquenil. The Doctor while right to be wary of steroids, could still have safely tried you on this. For many people it makes a lot of difference.

There is a huge variation in the amount of facial rash people get. My Daughter has none and is pale skinned. I have some, and worse in UV Light or when ill or tired.However, mine is nothing compared to waht some people have. Many girls just look slightly pink and well! I am ill in the sun long before it gets a chance to make the skin worse. Your Doc. is not well informed and I am not sure he wants to learn. A good GP is worth a lot to us.

A Rheumy appt. is a good way forward for you. Must be with a Rheumy who is good with Lupus. (Many do not see enough Lupus to really keep up to date on it)

I was another one who waited a very long time for diagnosis then was diagnosed in no time when I got to the right Consultant. If your consdition is Lupus or similar you may well improve with treatment. I used to be so weak I could not walk because my shoes were too heavy-so I do know what you mean especially about not being able to lift things. Word of warning, please be careful in the Kitchen. No heavy hot pans or kettles.
x Lola

 

[KarolH]

Hi Mathers,

I am a firm believer that you know your body best! If you feel something is wrong then it is a matter of finding a doctor that will work for you, not against you.

Like the others have said here, I was also mis-diagnosed for years. It started with a diagnosis of CFS (Chronic Fatigue Syndrome), then Fibromyalgia, then we graduated to Multiple Sclerosis (which I knew I did not have) and I carried this mis diagnosis for over 3 years until my blood work FINALLY started to point towards Lupus and other Auto Immune things to accompany it.

I had a positive ANA back in 2003, then for years it was negative and then it became positive again in May 2008. Once I found a Rheumatologist that wanted to work with me we moved ahead with a lot of blood work and I finally have concrete answers.

You have been given great advice from the others here and there is not much I can add. It is very important to see a Rheumy doctor that will work along side of you and really listen when you speak.

Good doctors are sometimes hard to find but if you look around eventually you will find one and then the answers will follow.

Good luck and let us know how you make out moving ahead.:wink2:

 

[mathers]

Thank you all so much for your feedback and support. Joan, I'm in the Toronto Canada area. If anyone knows any good rheumey docs, please let me know. I can't recall if any further bloodwork was done by the rheumy at the time, it was so long ago. I do know I did not have any further follow-up appts. with her.

After asking my GP four times, he said he would re-do the ANA, but not for a few months, because he said a recent viral illness can give you a false-positive. Then he basically said to get lost. He's very reluctant to refer to specialists generally. I don't know that a private option is available in Canada, and even GP's are a scarce commodity.

 

[Joandublin]

Hi again Mathers

Here is a link to the Lupus Ontario website and you can contact them for advice on a good Rheumatologist in your area

http://www.lupusontario.org/

We also have a Find a Lupus Doctor Forum here and you can post there asking other members for recommendations. Here is a direct link to that Forum for you

http://www.thelupussite.com/forum/forumdisplay.php?f=49

Its true that some viral illnesses can cause a fleeting positive ANA. Of course thats pre-supposing that what you had recently was in fact a viral illness and not something else... Your GP doesnt sound like the most helpful of sorts Anyway keep pushing ahead and insist on that ANA test as soon as you can. In the meantime contact the Ontario group as well.

Best of luck and let us know how everything is going

Take care
Joan:rose: