View Full Version : Confusing - lack of clear diagnosis

08-26-2008, 08:42 PM
Hello - I am new to this forum. My GP is fairly convinced that I have lupus because I have six of the eleven classic symptoms: face rash, photosensitivity, mouth ulcers, pleurisy, positive ANA test and pain in two joints. I also have an elevated sed rate. The problem is that the pain is in my shoulder joints, neck and upper arms muscles and is extremely severe at night and improves during the day. I also have a very inflamed and damaged oesophagus that has become so narrow and constricted that I cannot swallow anything any larger than a pea - all my pills have to be crushed. This has been going on for nearly two years and a gastroscopy showed small tears (rips) that appeared in my oesophagus when the camera was down there. My oesophagus has become very friable so I've been told to make sure I don't vomit in case it ruptures and a biopsy showed severely inflamed cells.
So, today I went to the rheumatologist who told me that he doesn't think it's lupus because it's my shoulders that are affected. He dismissed the mouth ulcers (anything can cause that) and ignored the pleurisy. He told me that he thought the oesophagus problem was not connected. He suggested the shoulder and neck problem might be polymyalgia rheumatica even though my hips are not affected. He wants to put me on prednisone because he claims if it helps that would "prove" it's polymyalgia. I'd prefer not to go on prednisone if I don't need to. At the moment celebrex is providing very slight improvement for the pain.
Any thoughts? Maybe he's right but it leaves a lot of questions for me as to what else is going on.

08-27-2008, 12:26 AM
Hi WendyR:
I would say that your new doctor needs to be educated a bit more about Lupus. With Lupus, the bodyís immune system stops working properly. The immune systemís job is to fight off germs and disease. However, with Lupus, the immune system attacks healthy tissues. This attack on healthy tissues causes those tissues to become swollen and painful. This is called inflammation. Inflammation can happen in the skin, muscles or joints. The heart, lungs, kidneys, blood vessels or the nervous system can also be attacked by the immune system.
With SLE, there are periods of inflammation or worsening symptoms, called flare-ups or active Lupus, and then there are periods where there is little or no inflammation or symptoms are minimal, these periods are called remissions.
What your doctor should know is that one of the primary warning signs of Lupus includes:
* Pain in the muscles and joints of the hands, arms, shoulders, neck, feet, knees, hips or jaw. The pain may move from area to area and may cause the skin to feel hot, be red or swollen (edema).

The other warning signs of Lupus are:
* Fever and loss of appetite.
* Low energy and fatigue.
* Skin rashes, often on the face. Sometimes the rash is across the cheeks and bridge of the nose. This is called a butterfly rash. Sometimes the rash is red and scaly and appears on the face, scalp, ears, arms or chest. A milder form of lupus, called discoid lupus, typically causes this type of rash.
* Small, usually painless sores in the moist lining of the mouth or nose. These are called mucosal ulcers
* being very sensitive to sunlight.
* Changes in the color of the fingers when they are cold (Raynaud's Syndrome).
* Sudden and unexplained weight loss or gain.
* Increase in the number and severity of headaches.
* Increase in loss of hair over the whole scalp.
* Chest pain when lying down or taking deep breaths
* Ongoing high blood pressure.
* Swelling of the feet and legs.

Now, Lupus is a different disease for each person it affects because it can target any of the body's tissues. Each person has his or her own combination of symptoms and these symptoms range from mild to severe. Recently, more and more Lupus patients are presenting with symptoms of both Discoid Lupus and Systemic Lupus (I, personally, was one such person).
Diagnosis of Lupus can be difficult because the symptoms vary from person to person. The symptoms can also mimic those of other medical conditions. Usually a diagnosis can be made when there is evidence of a number of the main warning signs of Lupus (as stated above), and other conditions that can also indicate the presence of Lupus. These conditions include:

* Pleuritis (Pleurisy), an inflammation of the lining of the lungs
* Pericarditis, an inflammation of the lining of the heart. These two conditions will cause chest pain when lying down or taking deep breaths.
* Decreased kidney function, which may be mild or severe. Weight gain or swelling of the feet and legs may indicate kidney involvement.
* Central nervous system involvement. This may be exhibited by seizures or psychosis (acute disturbance in mental functioning).
* Decreased blood cell count (lower than normal amounts of circulating red blood cells, white blood cells or platelets)
* Autoantibodies present in the blood. These point to an abnormality in the immune system response.
* Antinuclear antibodies present in the blood.

It appears to me that you fit the criteria, both for warning signs and for other conditions. I cannot diagnose you, but you mentioned that you had been previously diagnosed. It might be helpful for you to tell your current doctor about the above warning signs and conditions that indicate Lupus.

Prednisone is one of the cornerstone treatments for Lupus. So, for your doctor to say that if the Prednisone works, then your condition is not Lupus is rather ludicrous! If your condition IS Lupus, Prednisone often works to alleviate symptoms. Here is a web site about Prednisone & Lupus. After you've educated yourself about the drug, it sounds like you need to also educate your doctor.

Please let us know how your doctor's visit goes and how you are doing. Also, we are always here to help you in any way that we can.

Peace and Blessings

08-27-2008, 03:18 AM
Hi WendyR,

Welcome to WHL. I'm very sorry that you are having to deal with all this pain, and confusion about a diagnosis. I don't think your rheumotologist has a clue. Sorry to be blunt, but he is wrong on many levels. As Saysusie said, prednisone is one of the main treatments for inflammation caused by Lupus. I was diagnosed with SLE in 2004. One of my most painful, and persistent problems is severe neck and shoulder pain. So much so that I have difficulty sleeping. As for the mouth ulcers, yes, there are many things that can cause them, and if you only had mouth sores without any other symptoms, it would not indicate that you have Lupus. But, mouth ulcers combined with all your other symptoms paints a different picture.

I'm not a doctor, and I certainly cannot diagnose you, but you do have some of the most common symptoms of SLE. From the information you have given, it sounds like you have more than enough of the criteria for a SLE diagnosis. You sound like so many of us here. We all knew that something was wrong, and although none of us wanted to be diagnosed with SLE, we wanted, and needed an answer to explain what was happening to us. For me, it was a relief to finally know what was causing all my symptoms. It was also a relief to get started on the various treatments and lifestyle changes needed to keep my flares under control.

I would seek a second opinion. In many cases, SLE is quite manageable, but first you, and more importantly your rheumo/GP need to know you have it. I hope you find the answers you need. Please let us know how it goes. And once again, welcome!


08-27-2008, 06:54 AM
Hi -
I agree with Saysusie and Rob - your rheumie is clueless. When I was put on prednisone, I was told if it works, its probably LUPUS...And it did.
I think you need to see your regular GP asap for a referral to a new rheumie. Do not take no for an answer. Unfortunately, we all have to be very proactive with this disease, as there are TOO MANY doctors out there who do not have a CLUE...
You have more criteria than most during lupus presentation....it usually takes a couple of years for different symptms to manifest.
Please - do not put this off - find another doc ASAP. In the meantime, feel free to stick around and vent. The people here are great - informative and compassionate...
Take care,

08-27-2008, 07:54 PM
Thank you so much, everyone, for your prompt and helpful replies. I have made an appointment with my GP for tomorrow to discuss with him what the rheumatologist had to say. I did some research into polymyalgia rheumatica (PMR) and found out that it often responds within 72 hours to prednisone so I suppose that's why the rheumatologist suggested that if I responded to prednisone then it would "prove" PMR. I had a thought that I could consider taking prednisone for just 3 days to see whether I had that rapid a response so I'm going to discuss that with my GP tomorrow.

Your replies did encourage me to ask for a second opinion because I don't see how I can ignore the pleurisy and the damaged oesophagus that could become life-threatening if I don't get it figured out. Rob - the fact that you had pain in shoulders and neck confirmed for me that this can indeed be a symptom of lupus. That was what my rheumatologist seemed particularly to dismiss. He said my symptoms were not typical of lupus! It's hard to argue when he's supposed to be the expert. The trouble is my GP will not make a firm diagnosis of lupus without confirmation from a rheumatologist because he feels he's not qualified to. However, he was the only one to ask me if I ever got mouth ulcers. The rheumatologist didn't seem interested.

I felt much more upset when the rheumatologist said he thought it wasn't lupus than I was when my GP said he thought it was!!! Maybe I was hoping too much for a tidy diagnosis to an odd mix of symptoms.

Thank you again, everyone,

08-27-2008, 09:42 PM
Hi Wendy,

I should add that I have had pleurisy for many years now. Taken by itself, it's straightforward inflammation. With the rest of my symptoms though, it was one of the things that actually helped me get a solid diagnosis of SLE. I hope you get an answer, and a plan for treating your problems, sooner than later.


08-28-2008, 02:25 AM
Hi Wendy,
Welcome to the site. I have had Lupus for many years and I have issues with pain in my shoulders too and asophegus problems too. I also have the Pleuresy of the lungs a lot too. It sounds like you may very well have Lupus. Lupus is serious and I hope that you get some clear answers and soon.


09-12-2008, 09:32 PM
Hi everyone - the site seemed to be down for a few days to I wasn't able to post a follow up after my visit to my GP. He agreed to send me for a second opinion because he wasn't very impressed with the way the first rheumatologist dismissed so many of the symptoms as irrelevant. He agreed it was a good idea to try a low dose of prednisone for a few days and see if I had a "dramatic and rapid response" which could indicate polymyalgia rheumatica. I did that but had a slow and limited response so it's still up in the air. It certainly didn't provide the "proof" that the rheumatologist was looking for. So it seems as though nothing has changed yet - I may have lupus or I may have two or three rare and unconnected illnesses!

In the middle of all this, my oesophagus flared up again and I couldn't eat properly for three or four days. When my oesophagus is sore and inflamed, I often get an inflamed mouth and tongue, sometimes with ulcers, sometimes just red and very sore. Does anyone else suffer from a sore and inflamed mouth?

Your previous replies were all very comforting. Thank you.


12-04-2008, 11:11 PM
I finally had the opportunity to see the second specialist who spent more than 1 1/2 hours with me and thoroughly checked all my joints and the results of all the tests. He won't rule out lupus but thinks it's less likely because some of my symptoms don't quite fit. He disagreed with the first specialist's diagnosis of polymyalgia rheumatica, partly because of my poor response to low doses of prednisone and my age.

He diagnosed inflammatory arthritis, probably ankylosing spondylitis(AS), rather than rheumatoid arthritis. The symptoms of AS can include mouth ulcers and extremely photosensitive eyes (which I also suffer from). He's put me on plaquenil and hopes to start tapering me off the prednisone in a few weeks.

So it looks like it's not lupus, although I'm not sure whether AS is a more hopeful diagnosis! Kathy - I noticed that you list AS on your posting - can you tell me more about how you are coping with that?

Thanks again for being such a wonderfull, supportive group of people. I've taken much comfort from reading all the posts over the past months.


12-05-2008, 06:03 AM
Hi Wendy,
The most severe pain that I have is in the back of my head, my shoulders, and accross my back. I also have Fibrymyalgia, and these are specific pressure points associated with FMS. I also get severe pain in my chest (also FMS pressure points). Pain in these areas may have delayed my Lupus diagnosis, because I have always associated pain with FMS, not that it might be something else.

Keep looking for good Rheumatologist.....they are out there, but you have to weed through the lazy ones.