[MrsAsh]

Hello Everyone,

I have been reading here for awhile but haven't really posted much. I am going through quite an interesting period right now related to being (or not being) diagnosed with Lupus. Okay so basically I am wondering what you would do after hearing this (long) story. Thanks in advance!

October of 07 I started having a lot of joint pain in my hands. I also felt like my vision was decreasing a little. Anyway, i went to see my GP (who I don't see anymore bc she retired) about the hand pain. She did a lot of blood tests including ANA and Sed rate. ANA was mildly positive and Sed Rate was great. None the less, she referred me to a Rhumie.

In the meantime, I also had an eye exam. She said that my vision is fine but that I do have dry eyes. I asked about Sjogrens, but she blew it off. So, I don't know what to think of that really.

Went to the Rhumie in January. He did TONS of blood work and said that I didn't have the classic Lupus symptoms so he also wanted to check for Rhum Arthritis. Anyway, the things that came back positive were the ANA again and a positive Smith-test. So, obviously at this point I thought I had lupus. He said that I still didn't have enough physical symptoms to get a diagnosis and to re-do all the blood work in another 6 months and come back.

The whole six months I am basically preparing myself for Lupus. I had came to accept it. So, 2 weeks ago I re-do the blood work and go for my appt. He does the usual checking of the joints, etc. Then he goes over the blood work. A couple of unrelated things were VERY slightly out of range like creatin. Then he says "Well, your ANA was negative therefore they didn't do the smith-test. I don't think you have lupus." Ummmm....what?!?! Like that was not what I was expecting. So I asked what should I do from here. In so many words he basically said..."have a nice life".

I take the good news back to my hubby and family. They think it is great and I should believe him and be happy. However, I feel like...were the blood tests wrong? Why was everything positive before?? I am a skeptical person. So, if you actually read all this......what would you do? Would you believe it and move on or would you go to a new doc for a 2nd opinion? I REALLY appreciate any advice anyone can give on where to go from here.

 

[wifajax]

Hello!

I guess the answer to your question depends on what would really give you peace of mind. If you are a skeptic and will constantly wonder "what if," get a second opinion. If you get the same information from another doctor, perhaps you will feel more confident about your situation.

If you are not experiencing symptoms beyond joint pain at this time, you may want to take the rheumy's opinion to heart. Revisit the situation if you develop additional symptoms down the road.

Sorry to play both sides of the fence, but my opinion doesn't count for much when you are the one living with the consequences. Do what in your heart you feel is right for you. That is the path I followed when my first rheumy told me the same thing yours did.

Good luck!

Terri

 

[elisabethm]

Hi i was told the same the first rhumy that i saw said a definite yes so went on the palequin.Went back in January of this year and he said not sure stop the palequin but i went back to my own doctor and told him what the rhumy said and he said to go back on the palequin and he wrote a letter to the hospital and told him what he had done.My own gp phoned me last week and told me that he gor a letter that basicly do what you think so we are.But i do have other things wrong with me so if you feel you need to be seen then ask to be refered back Hope you get the answers that you are looking for All The Best Elisabeth

 

[Katharine]

Hi there,

I agree with wijifax about peace of mind and if a second opinion would give you that then that's what you need.

I'm not very good on bloods but it is important to remember that it is necessary to have bloods and symptoms for a diagnosis. If your only symptoms are pain in hands and slightly dry eyes then I would think you don't have enough symptoms but that you should be monitored.

Of course, you may have many more symptoms. I don't know your case well enough. Usually, by the time we end up insisting with docs it is because we really can't continue living as we are. The endless tiredness, joint pain, hurting all over, headaches, concentration problems, sleepless nights, inabilitly to work because we simply don't have the energy...

I guess the answer to your question, "what would you do?" for me would be "is life acceptable to you as it is?" I know that mine wasn't and I had terrible difficulty getting a diagnosis as my bloods showed nothing to begin with and only started showing things long after I had been diagnosed on clinical symptoms and a skin biopsy.

just my thoughts,
Katharine

 

[CooCoo]

Have to say keeping going until you are satisfy it is your body and your health. You might be at the start of SLE or some other autoimmune illness.

I was sick all of my childhood and was not dx until my early 20's. Sometimes it takes many test and many different doctors and my sets of eyes to get to the bottom of the problem. So keep plugging away and don't take no for an answer.

Good luck and take one day at a time..Remeber you aren't crazy either.

 

[Maia]

Usually a positive Smith is proof positive for lupus... so I can certainly understand why you spent those 6 months preparing yourself for a lupus diagnosis.

In your shoes, if I was relatively healthy and happy then I'd ride off into the sunset and try to put it behind me. But if I was still having a lot of pain and fatigue and unanswered symptoms, then I'd keep looking for answers and solutions to your symptoms. It is possible you can get your GP to occasionally test you for lupus bloods in the future too if you would prefer that.

I hope you don't have lupus obviously! But keep after things and don't slip through the system if you still have problems consistent with lupus.

 

[KarolH]

I am a big believer in 2 things.

#1...You know your body better then any doctor.

#2...YOU know if something is wrong and if you think there is then seek other opinions.

The attitude of "Have a Nice Life" would have me looking for another doctor.

We have to be our own health care advocates, period!

My first visit to a Rheumatologis was years ago. I knew something was wrong but like you I was blown off.

I stood my ground and found doctors who would listen.

Now, I have a diagnosis of Multiple Sclerosis, Lymes and possible Lupus.

If I would have settled for the doctors opinion, ya know the one that blew me off, then I would have settled for, "Fibromyalgia and Chronic Fatigue Syndrome" yet my female intuition told me that this was the answer I was given because he, the doctor did not want to take the time to really find out what was wrong with me.

Best of luck to you in search for piece of mind.

Go for 10 opinions if you have to. You WILL find someone to work with you and not against you.

 

[sam101360]

Hi:

Sorry for your dilemma...I think you should as others have said, investigate further if you have more symptoms than painful joints in hands and dry eyes...Otherwise, wait it out for more things to start to act up.

I just want to add, that not having positive blood test does not preclude a Diagnosis of Lupus. I am a serum negative person...I never have positive definative bloods, I just get some oddities once in a while. Also my sed rate has never been above 29, but my muscle CPK's have been in the high hundreds...Everyone is different.

I had rashes and that was how I got my DX for SCLE, the rest came after my symptoms worsened.

You have to live in your own body, if it's too much stress to have an inconclusive dx get a second opinion...but just know that this journey once started can take many years of up and down hill travel.

Sorry I couldn't be more help - Stephanie

 

[wolfieUK]

hi there

just to say go with your own intuition.
obviously if the bloods have come back neg and you can just "get on & have a nice life" then fantastic, but if you still want to get to the bottom of your symptoms, then try another avenue ;o)
ie: if your aches & pains aren't down to Lupus, what are they down to ?

Goodluck
Wolfie

 

[LolaLola]

I think you really do believe something is wrong. I can understand your family being pleased at the lack of diagnosis, but maybe you should look further if you find your symptoms affecting you.

Could I also add that a positive lupus diagnosis can be bad news for things like Health Insurance, Life Insurance, Mortgages etc. so if you need to plan anything along those lines now is the time before any possible diagnosis.

I hope it goes well for you, keep us posted.
x Lola


PS Also not all Rheumatologists are experienced in Lupus, some may rarely see it. Do you know about your Consultant's experience?

 

[pammyd]

I see that there is no way to win

Hi there

I am reading your dilema wishing I tested positive in my blood. See my problem is the complete opposite. I have every, and I mean every symptom for Lupus, but my blood work comes out clean as a whistle.
I have been through dozens of specialists of all kinds, when they see me, first thing they say is that I have all the markers for Lupus, but when they test my blood they do the same than what they did to you. They say everything is "normal" and to have a nice day.

Not long ago I went to see a rheumatologist at John Hopkins, when he saw me, he immediately admitted me to the hospital. My color was gray and blue, I looked dead. After 2 days of tests, which came out normal, he came to my room and said "I don't know what you have, but I know it is not going to kill you. I think you should go home because this may just go away on its own"
When I explained to him that this was getting worse for 2 years and there was no way I was just going to wake up one day and it would be gone he said "Well then you have to wait until it gets worse"
Needless to say he walked out of my room while I broke into tears. I already can barely live a normal life, I'm in pain all the time and the only thing I have to look forwards to, is to getting worse so I can get a diagnosis and a treatment.

What I don't understand is how we can all be saying the same things. How can the doctors knowing that we all go through the same thing not find a way to diagnose for these illnesses sooner, or at least find a way not to treat us like crap, or like we are crazy.
I have about 12 visible symptoms, 8 of them are supposed to be Lupus markers, and yet doctors treat me like I am crazy and that I am obsessed because I should just take their "I don't know" answer and go away.

I feel bad for you, and for everyone that has to go through this, and I can't believe that something hasn't been done about it yet. Doctors should not be allowed to treat sick people like this. I feel like all they want is the easy cases, runny noses and sore throats. But people like us that require some thought and patience they want nothing to do with. We are not talking such unique illnesses that it is almost impossible to fathom the patient could really be suffering from it. We are talking very common autoimmune illnesses. I just read somewhere that 1 out of 185 people in the U.S have Lupus, and that is just the diagnosed cases, so why is it so hard for a doctor looking at either positive bloodwork results OR all the symptoms not want to believe that it is Lupus?
You know what I think it is? I believe they don't like to diagnose it for 2 reasons 1. They are scared to be wrong. 2. They can't cure it and it frustrates them, so they just wants us to go away.
Either way, we pay.

Sorry if you got through all that, I am a little mad. I got more "normal" test results today.