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I tested positive for RA but he says since it doesn't take me 45 minutes to get up and walk in the mornings i am ok right now. I tested positive for an auto immune disease, but now he is going to do a full panel for lupus. I have had mouth sores which can be painful on my inside upper lip and the tip of my tongue and mouth are sore all the time. He says this is not what lupus does. With lupus you only get sores on the roof of your mouth and they are not painful. I also have red across my cheeks that looks like a mild malar rash and gets brighter after a shower, however he says it is not. He said I could have sores in my mouth from drinking out of a dirty glass. Would'nt you need an antibotic for that and would an infection like that come and go over the last 6 weeks. I do not feel very confident in his anwers. He also says if it is lupus there is nothing that can be done unless you have a bad flare and then you can go on steroids. This doesn't seem right after all i have read on the forums. You advice would be helpful. Teri
 

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I shall leave constructive helpful comments and advice to those better able to give such, but I do have a comment on your physician.

:mad::mad::mad::mad::mad::mad::mad::mad::mad::mad::mad:
I hope things improve for you and that you have a healthier time.
Douglas+​
 

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Hello Teri
I hope you can find another rheumy because some of this one's comments are worrying and he doesn't seem to have a very caring attitude. At least he is doing more tests.

I tested positive for RA but he says since it doesn't take me 45 minutes to get up and walk in the mornings i am ok right now
.

The RF can be abnormally high in any number of diseases, both other connective tissue diseases and some infectious ones. It is often high in Sjogren's and frequently found in lupus too.
Degrees and extent of stiffness are significant in assessment but I don't think it is correct to say that a person with RA doesn't get treated until they can't walk for the first 45 minutes. Early aggressive treatment for RA is regarded as very important these days. There's another test, CCP, which is more sensitive at detecting early RA.


I tested positive for an auto immune disease, but now he is going to do a full panel for lupus
Why didn't he do this before as soon as the ANA came back at 1:620. I am not sure what tested 'positive for an autoimmune disease' means exactly. ANA can be found in any number of diseases and conditions both autoimmune disease that are not connective tissue diseases and diseases that are not autoimmune. But Lupus and sorts of lupus are the main diseases in which levels are diagnostically significant.


With lupus you only get sores on the roof of your mouth and they are not painful.
This simply isn't true. Mouth sores can be elsewhere and they can hurt like all heck

I also have red across my cheeks that looks like a mild malar rash and gets brighter after a shower, however he says it is not
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It can't be determined if it is a lupus rash or not just by looking and what about the red patch on your back. In tricky cases biopsies can often show that skin problems are lupus related. Biopsies from unaffected areas can also show lupus, as can unaffected and unexposed areas.


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He also says if it is lupus there is nothing that can be done unless you have a bad flare and then you can go on steroids.
This is very seriously wrong. Does this fellow have board certification? Rheumatologists can't be expected to know a lot about lupus because it is a speciality within a speciality but such ignorance about general treatment of lupus and similar diseases is frightening. Heaven knows how many lives he is ruining through ignorance and negligence. I'd consider reporting him.

I think you are absolutely correct in your assessment of him. You may not have lupus but not for the reasons he has given. I do hope you can manage to see a lupus literate doctor. Have you asked the LFA for advice in your locality?

Let us know how you get on please and best of luck

Clare
 

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Ditto what Clare said. Also, lupus is diagnosed on meeting 4 of 11 criteria with OR without lab work. Mucosal, which equals mouth as well, sores are one of the 11 criteria. I have had sores on the roof of my mouth, on my cheeks, on my gums, and yes, on my tongue. For this doctor to play the "G*D" role is inexcusable. What happened to "do no harm"?

Personally, I would get copies of all my medical records and find myself a doctor who knows what he is looking for. This doctor is down and out scary in his ignorance.
Good luck which ever way you end up going with doctors.
Sally
 

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yep, agree with the others, this ?Dr does not know what he is talking about. Get to a Rheumy who has proven track record in auto immune illnesses near to you. You need to trust them and be part of an ongoing team with him/her. It is your body and ultimately you will be the one suffering, not him, if he treats you incorrectly, which with the current Rheumy is a strong possibility.
All the best.
Claire X
 

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Hi and welcome.
I think Clare pretty much covered it.;)
After the lupus panel has been completed I would gather up all test results and find a new rheumy.
Good luck
 

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Hi there,

I really don't think I can add to what Clare has said but just wanted to say that I agree. You do need to look into finding someone else. Even admitting that the guy did actually agree something was wrong, I sure wouldn't want him looking after me!! :eek:

Katharine
 

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Hi there,

Clare did state things beautifully here and I can not add much to what the others have said as well. You have recieved valadation from all of us in that we think a new doctor is a must.

I personally would not let this guy treat my dog, led alone a labratory rat!!!

He is a idiot, move on to bigger and better things.

Good luck and let us know how you get along.:wink2:
 

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Can't add much more than to say he's a bit of a fool . Get yourself another Dr quick.

the 45 min thing is "morning stiffness" they figure the more morning stiffness you get the worst off you are. for the most part this is pretty true but again it's not always as cut and dry as that. they asked me if i was stiff in the morning but to be honest, I said I go to bed stiff and in pain I wake up stiff and in pain, how do I know?
 

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Hi Teri, cant add much to what everyone else has said but I would definately change to a different rhuemy.

Sending you hugs & kisses
 

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Run, don't walk, away from this doctor. He is so wrong on so many counts that you need to get to another doctor as fast as possible.

That said... the type of mouth sore that is most likely to be due to lupus is in fact the painless one on the roof of the mouth. It can also appear in other areas but usually along the gum or gumline. There are other types of mouth ulcers that are common in the general population that are painless and have nothing to do with lupus; similarly with the painful lesions.
 

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Hi Teri

I think everyone has given you good advice and their opinions on your doctor so I wont add to that except to say that I agree with them. I just wanted to make comment on a few similarities between me and you that I noticed in this post and in your first post.

  • I tested positive for Rheumatoid factor also
  • It doesnt take me 45 minutes to get going in the morning
  • I have mouth sores regularly and rarely get them on the roof of my mouth - I think I only got them twice there. The rest of the time they are on the soft tissue inside my cheeks and on the edges around my tongue - mostly one side and on the tip. The ones on the cheek are usually fairly painless (unless I accidentally bite them:eek:) but the ones on my tongue are very painful :sad: I have three at the moment and cant seem to get them cleared up for the past couple of weeks.
  • I have red across my nose, cheeks and chest courtesy of the first bit of sunshine all year.
  • I have inflammation of the spine
  • I have degenerative arthritis of the spine
I have SLE. I take Plaquenil 400mg daily as well as an NSAID and currently on a low dose of pred.

Both of us cant be wrong....

Im glad he is at least doing a full Lupus panel but do try and get another Rheumy if at all possible.

Let us know how you are doing and if we can help any more
Take good care
Joan:rose:
 

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Can You Believe It

I Was Just Reading A Post That Really Shocked Me. When I Went To The Rhuemy I Showed Him The Redness On My Cheek And Over My Nose That Does Look Like A Light Malar Rash. I Told Him It Gets Brighter After I Shower. He Said No That Is Not A Malar Rash. I Then Told Him About The Spot On My Neck That Was Red For Along Time But Now Shows Up On My Chest Like A V Shape Similar To A Sunburn From Wearing A V Necked T Shirt. He Said That Had Nothing To Do With Lupus. The Post I Read Had The Exact Same Symptoms As Me . I Couldn't Believe My Eyes. I Am Sick Again When Sore Throat And Chills No Fever And Extreme Fatigue. Don't Know If This Is A Flare Or A Cold Since My Daughter Was Sick Last Week. I Am Going To My Regular Gp. Will Antibiotics Help If It Is A Flare?
 

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Antibiotics are unlikely to help if it is either a cold or a flare. It is unusual to have a bacterial infection without a fever, so I'm afraid antibiotics won't help . I hope you feel better soon - whatever is causing this last flare up of symptoms.
 

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Terri,
This is not right, there are medicines that can and do help. There is no cure for lupus if that is what he was talking about. Steriods are a common drug that is used for flares. Plaquinel is also a common drug used for lupus. It never seems to amaze me that doctors scare us more than the internet does. Hang in there and we are here if you need us.
 

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No, antibiotics will not help if this is Lupus.

Most definetely get a new doctor.

Sorry your not well again Teri and I hope you get feeling better.

Maybe your GP knows of another Rheumy you can go consult with.

Sending hugs to you.
 

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It is sooo important that you get a new Rheumy Teri.. please heed our advice, there is no point at all in continuing with this person. Find out where a decent Rheumy is with auto immune experience. Get there with as much photographic and written log of symptoms as possible as soon as possible. You need to start trusting somebody who knows what they are doing, that will help you both emotionally and physically to start getting some of these symptoms under a bit more control hopefully. You also need day to day good management and advice, you are not going to get that from the present people you are dealing with.. go seek a fresh, helpful alternative. X
Claire.. we are right behind you.;)
 

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Dear Teri,
I agree with all the other posts. I personally would encourage you to seek another opinion with all the symptoms you have. Remember you know your body and how it is feeling.

I wish you lots of love and support.

Remember to take one day at time

Reggie:)
 
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