Even more confused than ever

[becca10]

I had posted the other day about some concerns I was having and wondered if it had to do with the diagnosis I was given 2 years ago of APS. I had to start seeing a new hematologist today and he informed me that I DO NOT have APS as the previous doctor said. The doctor said I have Lupus Antibodies Coagulants in my blood...what the heck is he talking about? He ordered lab work to check the Lupus anticoagulants and Anticardiolipin antibodies. I go back in 2 weeks to see him again.

[MaryF Administrator]

HI that test you have had is actually a test for Hughes Syndrome/APS, this is why you MUST see a rheumatologist with full working knowledge not half of it. Also be aware it is possible to go through a phase of negative test results, but the disease does not go away. Please refer back to the information I gave you the other day or use information from another member nearer you. I enclose the link from our charity where you see that the name for one particular test, which you had is described as inaccurate and confusing. I suspect you need to be on more medication and need help of the expert time fairly swiftly. You have to find this help, as clearly they are not going to do so. hughes-syndrome.org/about-h... MaryF

[becca10 in reply to MaryF]

Thank you so much Mary...I did call a Doctor that I found on the link from the other day. The nurse I talked to said she was going to talk with the doctors in the practice and see if there was someone close to where I live and call me back. That was late Friday afternoon and as of now I have not heard back yet. I will give her until Tuesday afternoon and then I am going to call her back. I did call my GP and leave a message to have her call me so I can talk to her about finding me a rheumatologist that knows about Hughes Syndrome/APS. I know that the disease doesn't go away and that is why I am so confused by what this doctor said to me today. I know what I was told 2 years ago. I mean that is something you don't forget once you are told. I know, it is very clear that I am going to have to find my own help as no one seems to be willing or able to understand what I need. Really is quite frustrating to say the least. I am going to look at the link you gave me now. Thanks again!!

[MaryF Administrator in reply to becca10]

No problem. Let us know how you get on. MaryF

[becca10]

I certainly will

[Lure2]

Hi becca10,

I agree with Mary. She knows exactly what to do in your place as it is now.

It is obvious that the doctors around you do not know what APS is. I cross my fingers now for you to find the help you need so well.

Good luck and please let us heár how it goes for you!

Kerstin in Stockholm

[Manofmendip]

Hi Becca

I agree completely with what Mary has advised you.

Dave

[Hidden]

Treatments / drug therapy did reduce my anti-C antibodies and "normalized" my labs BUT it merely means that the disease is controlled as other posters had suggested. Once you have got the antibodies then it may go down or up and won't leave (?) but never say, never (?) as we can never tell these things as our human bodies are such a mystery lol

What you were told could be that the Doctor simply queried that you were given a diagnosis of APS 2 years ago but on what basis, possibly? This does occur when you see a new doctor who knows something about APS and lab workups needed.

What medications are you on currently and do you have your up-to-date lab results for Anti-Cardiolipin Igg / Igm to share (along with symptoms)?

[becca10]

I am currently on no medications. The last doctor that I saw for this never put me on any medication unless I had surgery. I am pretty sure he never did labs for the Anti-Cardiolipin that I can remember, so I have nothing to compare. Symptoms I have are severe headaches/migraines daily, muscle weakness, joint aches, fatigue, severe cramps in legs

[momtomany]

Hi, you sound pretty symptomatic to me. I am in WI so too far from you, but I suggest having a brief consult with any potential new doctors. Basically, give them an interview to assess their knowledge of our disease. I've found that most doctors won't admit when they don't know something.

Mary is correct as usual, the LA test ifs for APS. I hope you get the care you need.

[becca10]

Yes, I thought from what I have been reading that I sound pretty symptomatic too. I do have a past history of multiple miscarriages too. I am trying to research new doctors close to me to see if any of them have any knowledge at all about this disease, of course no luck yet. You are right, most doctors just don't like to admit that they don't know something.

I am not too thrilled with this new hematologist either. He has the personality of a piss ant..lol

[Lure2]

Hi Becca again,

Did you find someone on the link given by Mary? Is this new hematologist an APS-doctor? You must look for a specialist in APS.

Anticoagulation is the key. You have the diagnose. That is good.

Good luck from Kerstin

[becca10]

Hi Kerstin,

All of the doctor's on the link Mary gave me are about 5 or 6 hours away from me. I am still researching to find someone in my state, which I don't think I am going to find. This new hematologist doesn't know much about APS as far as I know or can tell from the way he is acting. I am really getting more and more disgusted as time goes on, but I will keep searching until I find the right doctor to deal with.

[Hidden]

But again, this hematologist did run the tests to check antibodies yeah?

Good luck with the follow up appointment. If antibodies are high enough, you may get the diagnosis confirmed.

[becca10]

Yes did that, thank goodness. I just wish my followup appointment was sooner that the 20th of this month!! I am scheduled for some surgery on the 4th of November and would really like to know what my diagnosis is so I can alert my surgeon.

[Hidden]

Good Luck, becca!! We're all rooting for you

[becca10]

Thank you so much, means a lot to have someone in my corner for a change