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Discussion Starter #1
Hello everyone. I hope that the spring is bringing some nice flowers your way !

I went for yet another opinion , this time to someone who is suppose to have "better degree, better hospital " whatever. So I go very well prepared and have about 4 pages typed out of symptoms, history, meds I tried, doctors I saw, etc. etc.

He reads it - very helpful for him. He says I have reynauds. Yup know that already. Asks if my feet are cold at night and if I wear socks. My husband went with me and says OH YA, HER FEET ARE KILLERS ! So about 10 minutes he spends talking about different socks. Right there and then I thought 'QUACK" Then he examines me. Says livedo. Already know that. It was on my list. He says dont' know what the bumps of swelling are on my knuckles,no suggestions about it either. Says I have frozen shoulders do some stretches. Flexes on my right knee....none.... Left knee good. He says nothing about no flexes on my right knee.

So skip forward after all the bull, he says I think you have anti. syndrome (clotting). I told him pretty sure I have been tested for this and I do not have it. My husbands says why do you think she has this? He says livedo and reynauds go with it. He says so you think that is what she has? He says yes I do. Ok Ein Stein. Well I would be stunned if i did have it but do not think I do and know I have been tested but got the test again anyway. So I say so the other symptoms fall under this? Already knowing the answer is no. He says no the other symptoms are suggestive of Lupus. I would stay on the Plaquenil. I would stop the Immuan. He knows how I just stopped the Immuran not too long ago due to being sick and then stayed off about 2 1/2 weeks and got stiff, pain, fever - bad. Then got back on. Isn't that an indication it was actually working for me? I thought that I proved to myself that Immuran was working,now Dr. Quack makes me second guess it again.

He says if my bloodwork does not show "active" Lupus I should not be taking it. All I need is Plaquenil and take pain meds, amitriptiline, despite I can't take that.

So what do you think about this? He is under the impression that if your bloodwork doesn't show activity, then you should NOT be on Immuran. Isn't it that your symptoms can be very real and present and not show activie Lupus on your bloodwork and you would treat it?

Cause now he put that doubt right back in my mind.

Too boot, I have my rheumo appt. coming up, I did not tell him about this second opinion appt..... do you think I should tell him I went and what that doctor said, or should I keep my trap shut? I am confused about that too..... tell him he said stop Immuran, then what?

Ok big book, sorry. But thank you for reading if you didn't give up already and for your opinions.
 

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Hi Paula, can't help with the immuran question, but I have livedo and very bad raynauds and do not have the sticky blood syndrome so what is he going on about...:lol: honestly what are they like??? Think you should be careful about what you say to the Rheumy about this second opinion, though my Rheumy was happy that I had sought a second opinion... it just confirmed his diagnosis and actually I felt very confident to then stay with my first Rheumy. I did tell him but in a roundabout way!! Just play it by ear and go with your instincts on that one.... all the best.
Claire X
 

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Pollianna
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Hi paula, I say keep schtum about this doctor to the other Rheumy. firstly for the sake of the ego and secondly if you don't value the opinion then why spread it ?

I never showed a thing in my bloods according to my general practitioner though I was dibilitated and in constant pain. I don't think it follows.

You know your body and you know what is helping you. believe in that and listen to your body.

Hope you feel better soon xxx
 

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Hello Paula
I think you have reacted to this fellow the same way I would have done, distinctly underwhelmed on the whole. However I would say that he was right to test for antiphospholipid syndrome, not that I especially want to defend him, at least to test for antiphospholipid antibodies.

After all you have the advantage of prior knowledge about your own case and a lot of experience and knowledge

I quite agree that his comment about being off Imuran if blood tests show no active disease, isn't very impressive considering that you have tried going without it and seem to need it. It's often forgotten that an important , albeit negative, aspect of the second opinion is getting the confirmation that the existing doctor is OK and this other one has no special revelaations or new treatment suggestions.

Interesting about your knuckles. Do they look anything like this?

http://images.google.co.uk/imgres?i...el=s&rls=org.mozilla:en-GB:official&sa=N&um=1

I often think about you and all the difficulties you experience. All the best as ever

Many hugs
Clare
 

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Yep, I agree with the others :)

Just on the point of imuran - My rheumy says my bloods are now good BECAUSE OF imuran - they very clearly changed after being put on it.

I certainly wouldn't bother sharing the opinion, just discreetly check that you've been tested for APS.

Katharine
 

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The Other Illinois Tammy
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Paula,
I would not let the other doctor know about the Dr.Quack. I only say this because if he is just that it does not matter what he said. Your normal doctor may think you don't trust him. You can ask some of the questions you would like answers to and see what comes of it. I do hope that you are feeling well and doing well.
 

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Discussion Starter #7
Thank you all for your replies. Yes I think I will not mention this to my rheumo.....hopefully nothing gets mailed to him !

but - if the test comes out positive, then I will. My husband said I can blame it on him and say that he made the appt. and made me go if needed.

He had no explanation he said for me stopping Immuran and everything going so severe. In other words, he did not think it was due to stoppin Immuran I guess.

I am going to stay on it, go with my what I aleady proved to myself, that it was working. I'll wait for the results and if any are positive, I'll decide what to do and say then.

Claire - my knuckles are more of swellling,almost like a ball next to the knuckle, not red, the other rhemo said lupus arthritis, this rheumo said no clue. I am sure it is not something rare and he should have known what it is. I have it in four spots now, the knuckle and the finger joints both hands and they really feel hard and like a round bone.

Thank you very much everyone !!!! Praying for good health for you all.
 
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