The Lupus Forum banner
1 - 6 of 6 Posts

·
Registered
Joined
·
24 Posts
Discussion Starter · #1 ·
Well I went to the rheumy this morning. He talked to me for maybe 10 minutes, poked around on me and then told me I have fibromyalgia and chronic fatigue syndrome. He also said that I could very well have lupus (he mentioned it, I didn't bring it up) but I don't have ALL the symptoms so he can't diagnose it yet. He was really focused on the fact that I don't have mouth ulcers, like that's the most important symptom or something. I asked him if there were other blood tests to try and see if it is lupus (I have only had the ANA and I KNOW there are follow-up blood tests, which the lab recommended be done) and he lied right to my face and told me there were no other tests and to just go home and come back if things get worse. I am NOT content with that answer! Why do I have a positive ANA if I only have fibro and CFS? And why the **** wouldn't he run the other blood tests? I am going back to the walk-in clinic tomorrow and asking for a referral to a different rheumy. I have the right to a second opinion, and this guy obviously doesn't know anything about lupus. Doesn't everyone around here say fibro isn't a real diagnosis anyway? I do have all the symptoms of it but I have a ton of lupus symptoms too.
 

·
Registered
Joined
·
2,661 Posts
Hi,

I'm sorry about your frustrating appointment. A second opinion does sound like a good idea.

For a start, there are more blood tests which should be done before making any diagnosis - like ENA, ant DNA, anticardiolipins, complement levels. Did he check your urine?

Fibromyalgia is a real diagnosis. Some doctors (and patients) give it very little respect, but it is a real diagnosis, and there is a real treatment plan. Especially since you say you have lots of the symptoms,I'd be inclined to agree with him about that one.

What I would object to is his statement that you have CFS, and maybe lupus if you get more symptoms. CFS is a diagnosis of exclusion. You can't have it if there is another disease process present, by definition.

Whether you currently have enough symptoms for a lupus diagnosis is a matter of clinical judgement. In a way, the diagnosis is the secondary issue, and more important is treatment. If it is likely that you have an autoimmune connective tissue disease, then the right thing for a rheumy to do is to treat you. Usually that would be plaquenil to begin with. It sounds like the rheumy was indeed suspecting you have ?lupus. Maybe he could have called it UCTD, that doesn't matter really, but not being offered treatment does matter. Also the not being properly and thoroughly tested and examined.

Do you have a followup with the first rheumy?

Let us know how you are getting on.

X C X
 

·
Registered
Joined
·
4,444 Posts
I would get a second opinion too, as follow up tests should have been done and the mouth ulcers is a pretty meaningless symptoms to focus on so much in trying to determine if you have lupus or some other autoimmune disorder.

My only positive tests were an ANA same titre/pattern as yours, and later positive anti-cardiolipin antibodies as well as low c4 complement. That and my history of lupus symptoms documented in my medical records (pleurisy, malar rash, joint pain, swollen joint, fatigue, long term low grade fever, etc.) is what got me the diagnosis.

Good luck and I hope you get into another rheumy soon. Did the 1st rheumy offer you any treatment for the fibro? There are definitely treatments for that condition and it is a real condition with a set of criteria to diagnose it if he did the proper exam of the tender points it could be an accurate diagnosis. Many here have both lupus and fibro.

There was a medical journal article out a few years ago that sort of encouraged a fibro diagnosis if the +ANA was at low titre and there were no other definite signs of lupus/specific to lupus. But at your titre, it is actually more likely to be due to some autoimmune disorder and warrants further investigation via blood tests and ultimately treatment.
 

·
Registered
Joined
·
2,404 Posts
Fibro. is very real and many of us have it as a secondary condition. The difficulty is that some Docs. will gladly give a Fibro diagnosis as a reason to stop investigating further. I can see that you must feel pretty let down by the Rheumy, it is so easy to build your hopes before an appointment and end up feeling crushed. I hate to say it but are you sure this Rheumy specialises in Lupus? Not all of them do. Myself and my Daughter were in the position where local Rheumies were a total waste of time. In the end we saved our breath as talking to them was pointless. We both now go to London. Among the many bright things I was told locally "you can't have Lupus, it makes people insane and you seem okay"!!! I am just glad I was encouraged by experienced people on good web sites as to where to go.
Good Luck
Lola x
 

·
Registered
Joined
·
15,684 Posts
Hi there,

This guy sounds like he hasn't got a clue. To not run the other tests on you after your previous positive ANA is in my mind negligent. It seems his internet rating of 2.1 out of 5 was pretty accurate, actually I'd give him a rating of minus 2.1 after that lack of effort :mad::mad:

The very best things you can do is dust yourself off and go and find someone who does actually know something about Lupus and get a second opinion. Ask around (on here and with your local lupus chapter) who are the docs that deal with it all the time.

Fibro is a real and very painful condition as the others have mentioned. The thing is that a lot of ill informed docs will just sling out that diagnosis if you don't fit neatly into their box of a connective tissue disease. It should never be diagnosed without a tender point examination and without further investigation to rule out other possibilities for your symptoms. You are right that it does not present with a positive ANA. To also diagnose you with CFS shows his ignorance also as Cath mentioned. It too is a diagnosis of exclusion when everything else is ruled out and you meet the criteria for it.

Good luck with finding a decent doc, many of us have trod similar paths but eventually we found someone who knew what they were talking about and gave us proper investigation which led to a diagnosis.

love
Lily
 

·
Registered
Joined
·
6,152 Posts
Definitely go back to that clinic and get another referral to a Rheumy and when and if you are eventually diagnosed maybe you can write a letter to that other idiot and ask him why he is practicing Rheumatology if he doesnt think there are other blood tests after the ANA which will help in the diagnosis or exclusion of autoimmune conditions :mad:

He is either a complete dope or a dangerous liar and in either event he shouldnt be treating patients:mad:

I do hope you find a better doctor the next time. Its good that you are at least informed about this process. Imagine someone who wasnt informed meeting up with this guy and just taking his word for everything? :mad:

Take care and best of luck
Joan:rose:
 
1 - 6 of 6 Posts
Top