APS Specialist

[Hale2s]

I am looking for APS specialist in Houston. I am currently seeing Cardiologist. And sister is seeing Hematologist. Both have just general knowledge.

[KellyInTexas Administrator]

Hi Hale2s,

I’m in Texas with you, but I am not familiar with Houston.

I’m assuming you need both a hematologist and rheumatologist?

Which do you need first?

Have you already been diagnosed with APS? By whom and where?

My specialists are in San Antonio.

One of my dearest friend’s son in in med school in Houston currently- and rounding.

I’ll give him a text and ask him who is the shining star in heme/ onc with a focus on heme.

That’s always what you want to ask when there is a big group - like Texas oncology- who is the hematologist in the group who truly focuses on the heme heavy cases, not the onc heavy cases?

[Hale2s in reply to KellyInTexas]

I have not been formally diagnosed. My sister has been diagnosed. My cardiologist thinks he diagnosed me after I asked him if I had APS. He said that makes sense. I have had 2 stillborns, 1 miscarriage and 1 premie at 30 weeks. I’ve had many DVT hospital visits. I was tested for Lupus in 83 and it was positive for autoimmune but not Lupus. My grandmother had multiple miscarriages and TIA’s so there does seem to be something hereditary. I had a hematologist once but he didn’t think about APS on my multiple hospital stays. He took me off blood thinners after six months and no reoccurrence. My experience is hematologists are sometimes more interested in oncology patients. I am now experiencing small DVT symptoms while on Lovenox. I want a doctor that sees APS patients regularly.

[Raw57 in reply to Hale2s]

Sounds like you need labwork for clotting disorders immediately. I’m in Fort Worth. I see Dr. Nania at Texas Oncology. I will ask his nurse if there is a true hematologist in the Houston group. I’m sorry you have suffered so much.

[MaryF Administrator in reply to Hale2s]

I think as KellyInTexas says, a move in the right direction for another consultant would be a good idea. I hope you are able to find one. Having that detailed knowledge also helps your GP to help you. However sometimes you get one, who is just keen to learn everything straight away, my children's old paediatric cardiologist was like that, he got skilled up on Lupus and Hughes Syndrome/APS and is now an expert and always looks for that now. MaryF

[KellyInTexas Administrator in reply to MaryF]

I’m having trouble finding…

[KellyInTexas Administrator in reply to Hale2s]

I’m having trouble. Getting hung up in the teaching hospital system only.