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Discussion Starter #1
So Dr. Quack as I call him, called me, and said the anti. syndrome is negative, which I thought, my ANA is negative, which is no surpise given the fact it has been since treatment started.

He tells me to stop the Immuran and a few weeks later stop the Plaquenil. I do not need to be on any of them. My blood work indicates no lupus.

So I play along knowing this guy is out of his mind. I say so it is your opinion that my symptoms are "suspected" of Lupus but since my blood work is negative I do not have it. He says it was "suspicious" of Lupus and since negative no way you have it and should not be taking meds for that.

I say ok, so I already did stop the Immuran and ended up with SEVERE pain and stiffness and fevers. He says not a fever if under 100.3. Jerk. Yes if my normal is 97.5 I know I feel ill at 99.9 even!

Then I say to humor myself, ok so with my symptmos and history you think I should not be treating with a rhemotologist? Then who should I see?

He says see your gp and get off meds, then you can call me to tell me how you are doing.

He says what symptoms are you concerned about? I say I gave you list. He says which ones though. I say "all of them" Dur....they are all concerning. He says well I think maybe you have Fibromyalgia. I say isn't Fibro diagnosed with trigger point pain? And you said I dont' have pain in the trigger points. Knowing my stuff...he doesn't know what to say and says well, I mean maybe the fatigue. Can you believe it?

So I have definitley confirmed to myself he has no idea about anything. He is a Boston, MA doctor suppose to be better right education, experience, top doctors.....nope....I can say definitely not.

Then get this he says you MAY have Reynauds. I said I DO have reynauds, not may. This has been seen by many doctors who have witnessed and diagnosed it. he thinks Reynauds is only out of the sticky blood syndrome and since that it is negative, I don't have it?

So I am besides myself. Loss of work, loss of money, go to someone you think will be more experienced. If I didn't know about all the ifs and buts about Lupus and other things, especialy from here, I would be off my meds thinking oh great I don't have it....but truth be told....this is real .

I am telling my gp - do not send that report to anyone when receive it.
 

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He sounds dangerous to say the least :eek:

I mean, plenty of us will end up with negative bloods when treatment is working (even if we still don't feel 100%) and it is proof that the treatment is working.

It's odd how some docs seem to think they need to diagnose (or undiagnose) you when you are not asking for the diagnosis to be questioned but just looking for a second opinion.

If anything it should reassure you that you are being well followed up by your current doc...

Katharine
 

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Gosh Paula that is really scary. Such a dork practising medicine while so ignorant. Not even knowing what a low grade fever is. :eek: The person who recommended him needs to know how very wrong they were so others won't fall into his grasp. At least you now know you could do worse than your current rheumy but that is small consolation

Many Hugs
Clare
 

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Thank goodness you have more knowledge about your body and illness than he does... frightening that he is sooo poorly educated about Lupus. :(
 

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Wow:eek: very scary indeed.
Thank goodness you are on top of things.:yes:

I shudder to think what patients he has steered wrong. :eek:hno:

Love,
Lyn
 

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That some of these idiots actually were accepted and graduated from medical school is down right scary. As you said, it is frightening that uninformed people will buy into his line.

The first rheumy I saw told me lupus could not be disabling. I guess not, just could kill some, but not disable them? He got fired right there. I did not need his kind of garbage. At the time, my hands were so swollen from inflammation that the skin actually split on the backs of 2 fingers. The scary part was that it relieved the pain so I welcomed it. I was working on a computer terminal all day, and my hands had always been my source of income.....dental asst, receptionist, insurance claim examiner. I could not do any of that then and he was oblivious to it. When I pointed that out to him, he told me I needed a new source of income!!! :eek::worried::eek:
Needless to say, he got fired.

My pulmonologist was actually the one who finally used the "L" word as a diagnosis. He has been my rock thru this journey. Then he diagnosed me with ILD in addition to sle and asthma. About that time I was dx with 60% loss of lung function. I remember running out of air just walking from one end of my house to the other. scary!

I am very sorry that Dr Jerko is able to see people and that people may actually rely on him for care.
Thank heavens you have the knowledge you do....
Sally
 

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:wavey: hi paula

you were much kinder to your dr quack than i was with the one i dealt with a week ago. i call mine dr. shewolf dolt. she is covering for my rheumy who is out the country playing drs without borders. she actually wanted to re-test and re-diagnose me and find a different treatment plan. i got extreamly ticked, told her i had a diagnosis and a treatment plan that is beginning to work. she said that she had to rediagnose me to see if she agrees that i need this treatment. i told her all she has to do is write prescription. well she said she doesn't believe in opiates so won't write those, if i want my cymbalta and trazadone i needed to go to a shrink. well that didn't go well and i just said "oh no no no, this will not do. you are not my doctor and i want to see my neuro-path. well she wouldn't get him. needles to say i walk out and told i will get my other doctor to oversee my case.

i can't tell you how upset i was, and i missed a months treatment. fortunately my gp is overseeing my case tho' the shewolf isn't very happy.

so don't give this quack another thought. you obviously have a diagnosis, and taking medication that is helping so he isn't worth the use of gray matter to worry about.

hope you feel better
take care
hugs and kisses
 

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You know your body better then anyone.

Sounds like you need a new doctor...........one who is not a quack.:hehe:
 

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In two words.................uneducated and dangerous :mad: Thank goodness we all have access to information and support here, where would we be without it, ignorant and very ill I suspect.

You handled it well Paula :) :hug:

love
Lily
 

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Discussion Starter #10
Thank you all so much for not making me second guess all of this. I needed that.

Spellbinder...what is wrong with this profession? I hope that you get that resolved and thank goodness for your gp.
 

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Dear Paula,
I am sure this is very upsetting and worrying for you but by keeping calm and asking questions at least you have clarified things. I have a friend here in the UK who feels really ill yet has been told to stop Plaquenil and Steroids because her lupus is "cured" ha ha -if only it were that simple.
x Lola
 

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Paula:

I just want you to know that you definately should not second guess yourself. I am a complete serum negative Lupie. I have Sjogrens, Reyanrds, SCLE, SLE, APS and RA. Yet I do not test positive for any of them.

I now have (more than mild less than severe) kidney involvement, the nephrologist said it's probably been there since the beginning, but no one tested since i had no positive blood work. He said I have been lucky to push for Drs who would treat me for my symptoms or I would have already been in kidney failure.

He assured me that 5% of lupus sufferers can have intermittent or never have positive blood work, but that doesn't mean we don't suffer.

The only indications for my lupus have been skin biopsies (all positive) sporatic low C3 and C4, consistent high positive IMg, occasional high CPK's and one low positive ANA. Otherwise my bloods are all very pedestrian.

I have been through good and bad Dr's who said you do/don't have lupus...but stuck with good ones who were willing to treat my symptoms despite the bloods.

Stay with it, you are your best advocate and the only one who knows what it feels like to live in your body.

As an aside...the fever issue...I run at 96.7 when not flaring and from 99.9 to 100.6 when flaring. Dr said that anything above my normal temp of 96.7 should be considered a fever and treated as such. Anything above 100.6 should call immediately.

Love and Support - Stephanie
 

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As a registered nurse, it never ceases to boggle my mind how very inept some of our physicians are. You need to be so proactive about your own health. Afterall, you know your:) body better than anyone. Don't let a physician tell you otherwise. You need to stand up for yourself, which it sounds like you are doing, & I applaud you for that. It isn't easy always having to push to get answers, especially since we with Lupus are supposed to keep stress to a minimum. I think if we didn't have to devote so much time & energy to seeking out good healthcare, we would be less stressed & maybe suffer less flares as a result.

Good for you for sticking up for yourself & keep looking for the right physician. He or she is out there.

Heidiho
 

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heidiho;544589 said:
As a registered nurse, it never ceases to boggle my mind how very inept some of our physicians are. You need to be so proactive about your own health. Afterall, you know your:) body better than anyone. Don't let a physician tell you otherwise. You need to stand up for yourself, which it sounds like you are doing, & I applaud you for that. It isn't easy always having to push to get answers, especially since we with Lupus are supposed to keep stress to a minimum. I think if we didn't have to devote so much time & energy to seeking out good healthcare, we would be less stressed & maybe suffer less flares as a result.

Good for you for sticking up for yourself & keep looking for the right physician. He or she is out there.

Heidiho
lol, I just posted another thread about this very issue. I had a rheumy tell me I had lupus two weeks ago and that my GP would deal with care and medication. Got a letter from my GP today saying come pick up your prescription. Great. That's the sum total care I've received between the two. One who couldn't get me out of the room quick enough after telling me I have a life changing condition, the other one just wants to dish out smarties. Fantastic. Everything I've learned about lupus has pretty much been on the internet and from people here on this forum. And I'm grateful for all the good people on here who are so supportive and helpful, despite going through their own health problems.

But yes, I'm quickly learning that GPs are quacks. Can't remember if I ever met a good one, do they exist?
 

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Discussion Starter #15
You are all so very right and we all go through this. That is why this is such a great place to learn, to vent, to ask questions. Without this site, I too would not know half the stuff I know about Lupus.

I say I tend to trust all of your experiences and advice more than most of the doctors !!!!!

I have written a letter to my gp explaining my appt. thanking him for the referral but that I was very unpleased with this doctor and not willing to get off my meds and that I would discuss further with my own rhemo. Also I said I am writing this letter so that you might refrain from referring other patients to this doctor.

I am sure he is thinking I am a quack maybe now as I just switched to him in Dec. so he really does not know me well yet ! Oh well...quack quack to me then !
 
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