Rheumatologist says I have APS & hematologist says I don't.

Posted by mrsruby @mrsruby, Jun 20 8:51am

Because of a stroke last year, I was advised to see a rheumatologist and a hematologist to find out the cause of the stroke and the lab findings. One says I have every indication of APS and the other is not convinced through a year of testing that I do have it. Currently I am on an aspirin a day and hematologist wants to put me on Warfarin and I'm not even sure I have APS. Anyone else confused with their diagnosis?

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Mrsruby, what do your labs read? It's healthful to question our diagnoses.
Anticardiolipin
Beta-2 glycoprotein I (β2GPI)
Lupus anticoagulant

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Profile picture for gently @gently

Mrsruby, what do your labs read? It's healthful to question our diagnoses.
Anticardiolipin
Beta-2 glycoprotein I (β2GPI)
Lupus anticoagulant

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@gently I have to be honest with you, there is such a long list of lab tests they took (also because of the M-Spike present) and all of this is so new to me. I'm a bit overwhelmed with all of their conversation while trying to agree on the diagnosis.

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mrsruby,
it is so overwhelming listening to this whole new complex language while already anxious and not so eager to hear the unwelcome diagnosis.
I'm glad the someone ordered the M-spike that triggered all these other labs. And that there is disagreement on the diagnosis. You may just want to a third opinion and fourth opinion. I like to say that if you see three doctors two of them are going to label you non-compliant because they'll all disagree.
I like to record all these medical consultations so I can look up all the terms and have a better understanding of what they're thinking.
But I also collect all the lab reports.
I have a brother who saves himself the stress by not questioning and letting the doctor decide. He's older and may be wiser.
With either diagnosis you probably need a blood thinner and might get the exact same treatment with or without the rare label to avoid another stroke.
Frightening to have a stroke. Have you completely recovered. Was it really strange.

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Profile picture for gently @gently

mrsruby,
it is so overwhelming listening to this whole new complex language while already anxious and not so eager to hear the unwelcome diagnosis.
I'm glad the someone ordered the M-spike that triggered all these other labs. And that there is disagreement on the diagnosis. You may just want to a third opinion and fourth opinion. I like to say that if you see three doctors two of them are going to label you non-compliant because they'll all disagree.
I like to record all these medical consultations so I can look up all the terms and have a better understanding of what they're thinking.
But I also collect all the lab reports.
I have a brother who saves himself the stress by not questioning and letting the doctor decide. He's older and may be wiser.
With either diagnosis you probably need a blood thinner and might get the exact same treatment with or without the rare label to avoid another stroke.
Frightening to have a stroke. Have you completely recovered. Was it really strange.

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@gently Yes, it was very frightening and even more so when in ER and things were moving so fast. After physical therapy and home exercises and in the hands of some excellent doctors, I have managed to only have some balance issues and misplacing words when my brain lags behind a bit. I have been blessed.

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Any time you have a stroke they recommend you take a blood thinner to avoid future strokes. Always get copies of your labs. My rheumatologist said everything was fine yet my sed rate said it was above 135. If you know anything about inflammatory markers it’s not supposed to be that high. It can cause organ damage. My doctors don’t like an RN questioning them. I have seen so many misdiagnosis because people don’t get copies of their labs they just take the doctors word. By Hippa you are allowed copies of your medical records.

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Profile picture for artemis1886 @artemis1886

Any time you have a stroke they recommend you take a blood thinner to avoid future strokes. Always get copies of your labs. My rheumatologist said everything was fine yet my sed rate said it was above 135. If you know anything about inflammatory markers it’s not supposed to be that high. It can cause organ damage. My doctors don’t like an RN questioning them. I have seen so many misdiagnosis because people don’t get copies of their labs they just take the doctors word. By Hippa you are allowed copies of your medical records.

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@artemis1886 Thank you so much for your information. I will start to copy off all of my lab work along with my questions for my next visits. I have my primary care doctor, a neurologist, rheumatologist and a hematologist that I have been seeing. Wish me luck getting them all on the same page.

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I have APS. Was diagnosed in 2011 while I was in the hospital for a TIA. The bloodwork showed it. I was on Plavix and aspirin. It failed me miserably. I ended up having a DVT break off and the clot went through my heart. Instead of going to my head, it went through the benign hole in my heart. The clot traveled to my spine and caused a stroke on my spinal cord. I am now paralyzed from the waist down. In addition, when the clot went through my heart it caused a heart attack. It all happened in a matter of minutes. I’m on warfarin now. It makes me mad because they didn’t decide that I should be on until so much damage was done. Day late dollar short in this case.
Please if trust the blood work and if they want you to go on warfarin do it.! It may be scary, but lower your chances of another stroke. I have a hematologist that manages the INR readings and I follow up with him every few months.

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Profile picture for artemis1886 @artemis1886

Any time you have a stroke they recommend you take a blood thinner to avoid future strokes. Always get copies of your labs. My rheumatologist said everything was fine yet my sed rate said it was above 135. If you know anything about inflammatory markers it’s not supposed to be that high. It can cause organ damage. My doctors don’t like an RN questioning them. I have seen so many misdiagnosis because people don’t get copies of their labs they just take the doctors word. By Hippa you are allowed copies of your medical records.

Jump to this post

@artemis1886
A sedimentation rate (ESR, or "sed rate") above 135 mm/hr is indeed very high. In most adults, ESR is typically under 20–30 mm/hr (depending on age and sex), and values over 100 mm/hr should prompt doctors to look carefully for significant inflammation, infection, autoimmune disease.
What was your CRP at the same time?

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Profile picture for imagine4134 @imagine4134

I have APS. Was diagnosed in 2011 while I was in the hospital for a TIA. The bloodwork showed it. I was on Plavix and aspirin. It failed me miserably. I ended up having a DVT break off and the clot went through my heart. Instead of going to my head, it went through the benign hole in my heart. The clot traveled to my spine and caused a stroke on my spinal cord. I am now paralyzed from the waist down. In addition, when the clot went through my heart it caused a heart attack. It all happened in a matter of minutes. I’m on warfarin now. It makes me mad because they didn’t decide that I should be on until so much damage was done. Day late dollar short in this case.
Please if trust the blood work and if they want you to go on warfarin do it.! It may be scary, but lower your chances of another stroke. I have a hematologist that manages the INR readings and I follow up with him every few months.

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@imagine4134
I'm so sorry you are paralyzed from the waist down.
I also have APS and a history of DVT, but I do not take aspirin or warfarin because I have von Willebrand disease type 2 and Factor V Leiden.

Unfortunately, very few physicians consult a hematologist or order ELISA testing for von Willebrand disease, which can lead to important bleeding disorders being overlooked.

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Profile picture for mrsruby @mrsruby

@gently I have to be honest with you, there is such a long list of lab tests they took (also because of the M-Spike present) and all of this is so new to me. I'm a bit overwhelmed with all of their conversation while trying to agree on the diagnosis.

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@mrsruby
Take the time to put all your lab results in an AI like Claude or something similar. I copied everything to my doc app and then to Claude. It will do all the research for you and point you in the right direction and give you questions to ask your doctors. Then find a 2nd rheumatologist and a 2nd hematologist to see if you can get consensus. In the interim, you have had a stroke and it seems prudent to start a blood thinner. I'm on eliquis because of AFib, PVCs and PACs and the risk of stroke.

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