Need an APS specialist in or near FortWorth Texas

[Raw57]

Just got a letter stating my hematologist is leaving his office. His replacement deals more with cancer not blood disorders. 😑

I went without treatment from 2012- 2018 so I really am disappointed.

Any information will be greatly appreciated!

[HollyHeski Administrator]

Hi, I read your previous posts and note Kelly (one of our admins) had many conversations with you and is reasonably close to you?

How did you get on with finding an APS specialists for your ears?

I'm not sure how easy it is for you to switch from the hematologist that you have been given within the same practice or to another - I'm sure 'our' Kelly will come on over the weekend to advise.

Are you under the same doctor as your son, I know he doesn't have APS but maybe would help to both be under the same specialist?

Can you speak to your current hematologist before he goes to explain your worries and get advice and further recommendation?

[Raw57 in reply to HollyHeski]

My doctor is handing over his practice to another doctor in the practice. My doctor only dealt with hematology patients. He has 3 APS patients. Maybe the doctor will be good. I do know he primarily does oncology but maybe he is making a change.

Kelly has suggested Dr. shen at UTSW. He has a good reputation but his advice almost killed my son. My son saw him. My son suffered from unexplained anemia and Factor II prothrombin gene mutation. Dr. Shen decided his anemia was caused by the blood thinners and that men never make DVTs with the Factor II gene mutation even though John has a history of DVTs and PEs. So he took John off blood thinners. He remained anemic and developed a DVT from his ankle to iliac vein and multiple PEs within a month.

So I was not too impressed with Dr. Shen. It takes a very long time to see him.

Kelly is extremely generous with her knowledge. I appreciate it so much. I do see my doctor June 12. I’ll discuss my concerns with yet another new doctor that might or might not have experience with treating APS patients.

And I did not find an ear doctor. I’m still having episodes of hearing loss and severe sharp headaches. I was going to bring it up in my June 12 appointment. Really I’m so tired of doctors. I’m sure we all are tired of the need to see them.

My doctors assistant told me he is going on a sabbatical not retiring. He is very caring and allows himself to be available to his patients. Hopefully he will be back.

[KellyInTexas Administrator in reply to Raw57]

Oh... that’s right! I forgot we talked about Dr Chen.

I do know of a very good specialist in San Antonio for your ears. I have used her. Dr Susan King . And your hematology as well. ( initial consultation if you need.) I’ll pm you.

Probably Sunday.

My Rituximab crashed my INR to 2. 9 yesterday and 2.16 today...

My Rheumatoligist prescribed a short sharp course of reducing steroids. He feels it will help.

[Raw57 in reply to KellyInTexas]

Oh I hope it does help. Sometimes that helps my hearing. I pray you have a restful weekend!

[Raw57 in reply to HollyHeski]

I will talk to my sons hematologist. He said he did not have any APS patients but he was knowledgeable about it. He tested John just make sure he did not have it.

[KellyInTexas Administrator]

I have one.

It’s through UT southwestern in Dallas.

Yu Min Shin

APS Specialist.

If you have trouble locating let me know. I’m on mobile at a Rheumatoligist appointment at the moment.

[MaryF Administrator in reply to KellyInTexas]

Great news that you know of somebody! MaryF

[Lure2]

I do hope you will find a Specialist for yourself and for your son also! They are usually Rheumatologists or Hematologists.

It is so very important with a Specialist for us as so few Doctors understand that we must thin our blood at a proper value (INR) to get without symptoms. Also that differs for us.

Some of us only need an INR of 3.0 in the vein but others must have an INR of 4.0 in the vein. Only a Specialist knows this and that we must stay stable there to feel ok which can also be very difficult for some of us. Some of us know at once if we are too low in INR.

Even if we have the same illness (APS) we are also very different as to symptoms in different organs, number of positive antibodies etc.