Hi everyone I just wondering if anyon... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Hi everyone I just wondering if anyone in my area has been diagnosed with APS.

SoulRebel-APS
SoulRebel-APS

Hi, my name is Stephanie L., though I go by Soul Rebel on line. I live in Roswell, NM. I was just wondering if there is anyone else in my area that has APS and like me, would like to actually know somebody else with APS. So if you live near my area and would like to talk let me know.

Thank you

22 Replies
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KellyInTexas
KellyInTexasAdministrator

Stephanie, how are you getting on? How about Albuquerque area? I remember once reading there was an APS knowledge doctor ( rheumatologist maybe) in Albuquerque. Have a look on the APS foundation of America link. Sometimes I find roads lead nowhere.

Does las Cruces have any kind of med school? Albuquerque? What about El Paso? UTEP? University of Texas El Paso? Is that about 2 hours away from Roswell?

Or maybe just a private physician in El Paso not associated with any kind of research?

I'm having a really rough time right now , too. I can't got my INR to stay stable . I'm steady with greens and I'm all over the place. I can feel micro clots- and DVT trying to reform.

Holahan ( my heme) is pretty good but hopefully you can find someone close. Albuquerque, Las cruces, El Paso...

The hemp I found in Las Cruses is the closest thing to specialist I have found. Dr. Bishnu Rauth, he Is great and works out of the more hope cancer center. He diagnosed everything one me and recommended the treatment but I believe him to be in his 70'a and is extremely busy

I have a hematologist in Las Cruces. His name is Dr. Bishnu Rauth, he diagnosed me. He didn't put a name to it but he is the reason I'm still alive! I'm gunna go see him in a month or two see what he has to say.

I to have an unstable INR, even if I eat the exact same food every week my INR bounces around. Lately I've been running mostly in the 4's 4.9/4.4 but then I will be 5.1 or 1.9. Some people are just unstable regardless of what we do. All we can do is try to stay up on it an not get to high or to low.

There I college in Albuquerque that I haven't even thought about thank u for bringing it to my attention. Definitely have to look into it!

Soul Rebel

Ummm....I think she was looking for another fellow 'sufferer' rather than a new doctor?

KellyInTexas
KellyInTexasAdministrator in reply to Ozchick

She and I had been in conversation about three or 4 weeks ago and she was seriously considering traveling to Texas to use my heme. (9 hour drive one way,) She even had the private line of his nurse I had given her. She is feeling so unwell it my seem over whelming- we've all been there!❤️

I'm assuming because she is asking she may be trying to find closer to home resources.

New Mexico borders Texas and the area around Roswell is very isolated and medical facilities are very poor.

I definitely agree that the two hospitals we have here are poor and clueless as well!

Hi,

I am afraid that will be like "looking for a needle in a haystack".

Better looking for a Specialist that Kelly suggests and that way get to know another APS-sufferer perhaps.

How are you today?

Kerstin

I hope you find someone close by. It's very hard, I live in a huge metro area and I don't personally know anyone (that I can lay eyes on) with this. That's another reason this group is so good for me, to know I'm not the only one.

I have a superb APS specialist, but in Denver area, if you want her info I can send it. I went to a hemo my first decade, and this last 4 months of having a specialist has made a wonderful difference in my life.

Good luck to you.

KellyInTexas
KellyInTexasAdministrator in reply to Tofino5

I assume you see Jill shofield. Who does she refer to for heme, and how do the logistics work? I'm in Texas, but was sent to London Lupus center by one of my neurologists because I was seemingly "refractory " to Coumadin" and some of my San Antonio team members wanted a solid plan from the worlds leading experts. I'm having continuing problems and in May my physician at the London Lupus center suggested I see Dr Schofield. She is 14 months booked out for new patient appointments! So, I do have a new patient appointment in July of 2018. I have, however, been wondering... since she's internal medicine, how does this coordinate with hematology? She just makes a suggestion for your current one?

Stephanie- Jill Schofield might even be an option for you. She trained in London under Professor Hughes. She is in Centennial Colorado.

I can tell you this much. I specifically asked my Doctor at London Lupus Center who they would recommend in the whole of the United States, and she took my question to the entire team, and Jill shofield was the only name that they gave me.

Tofino5
Tofino5 in reply to KellyInTexas

Yes that's right, I see Dr Schofield. I too waited many months to see her. I don't know who she refers to for a hematologist, but my long time hemo, Dr Kathryn Hassell, referred me to her. Dr S actually worked with Dr H for a couple of years, and Dr S has worked with Dr Hughes, so she is extremely knowledgeable. I no longer need a hemo - Dr S takes care of me.

My personal experience is that for 10-1/2 years I struggled to maintain a stable INR but no matter how obsessively I watched my food, it was never stable; plus my migraines were horrendous. I saw a neurologist during that time (for 9 years) and tried all the drugs but nothing helped for any length of time.

Then Dr Hassell referred me to Dr Schofield, who was setting up a practice. At that time the wait for a new appointment was 9 months, and I saw her at the very end of 2016.

In an attempt to help the migraines, Dr S recommended a switch to Eliquis (apixiban). Result is I've have a huge reduction in migraines, in number, severity and length. Also it's nice to not go to the lab twice a month and I can eat anything. Some on the Forum say that apixiban is not desirable to use, but I trust Dr S, her training and knowledge.

At this point, let me say that she treats people as a whole person, not a disease. She Listens. The capital L was on purpose. I know that I am in capable hands. She gives you all the information, studies etc, and supports whatever decision you make.

Even with that crazy-long wait she doesn't rush you out of her office. I feel like her only patient. Apixiban was my shot at reducing migraines (since Plavix didn't work) and I'm so thankful. My quality of life had been going downhill with no end in sight.

So, I'd say continue with your docs for these 14 months and keep that July 2018 appointment. I will PM you with my contact information, I live 20 minutes from her office.

Finally - if the London Lupus Center recommends her, that's really saying something.

Anita

KellyInTexas
KellyInTexasAdministrator in reply to Tofino5

Yes, Anita, pleas PM me with info if you could. I'm in Princeton NJ right now - with my family. ( daughter in PdD ) . I'm seeing a new heme here ( slight emergency) so I'm wondering about trying your plan with me. I'll check back with you in a bit. My appointment is st3:34 today. Never met this guy before- very nervous! My heme from San Antonio is in europe...

Tofino5
Tofino5 in reply to KellyInTexas

Yes, I PM'd you already.

Good luck today, try not to be nervous. Hard to do, I know.

Princeton/Griggstown is such a beautiful area, maybe looking around will help you relax a wee bit.

Anita

KellyInTexas
KellyInTexasAdministrator in reply to Tofino5

Haven't been able to receive any pm 's from you. (?)

not sure why they are not coming through.

I'm wondering if I've become Lupus anti coagulant positive since starting anti coagulants. I know it can happen- I only tested positive for the other two anti bodies.

I wonder if this is why I'm unstable. I'm so sorry to others here for taking space on a completely different post topic. I desperately need help today at heme appointment in a new state with a new heme . I feel about 50% certain my arm has reclotted. ( but I have thrombo phlebitis so it can feel similar.) I just got released on May 24 for clot in same arm. " no flow detected by doplar sonogram/ vein segment not compressible.) put in po- dunk rural hospital with Lovenox injection- not even heparin IV. I think it's not resolving correctly. No d dimer done. Son was in final exams so I did not go to San Antonio and my main heme did not get correct info.

Tofino5
Tofino5 in reply to KellyInTexas

I will try again.

Tofino5
Tofino5 in reply to Tofino5

I pm'd you.

It can be a nightmare some times to find or replace and to lose the good ones one in the same !!. I have been "pretty " lucky in the past BUT that is changing now !!

KellyInTexas
KellyInTexasAdministrator in reply to jetjetjet

Fingers crossed.

KellyInTexas
KellyInTexasAdministrator

Hey Steph-

I talked to my sister Sherry a couple of evenings ago about your request to find someone else in your area with APSs to connect with . She lives in El Paso and is a nurse. She is retired nurse and used to do circuit Work in New Mexico and the El Paso area. She worked Juarez area and the Indian reservations as well in New Mexico. ( locums.) She's still somewhat connected. (Our great grandmother was the First Nation Cherokee/ Pawnee woman to get a degree - in education- taught on the reservation- and married the red headed Irish 🍀 attorney who oversaw her curriculum! Lol! Go figure.)

She also trying to find a rheum to have her panels run for APS- plus the extended panel for the "additional antibodies" both myself and son test for..

She's going to ask around for you-Any APS support groups? As we all know- very unlikely- but you never know what " casting your nets might yield in unknown ways.

Kelly, I've asked several times, how are you doing? Did you reclot again when in Princeton? Did you find a specialist here?

KellyInTexas
KellyInTexasAdministrator

Yes, I responded to you that I did find a hematologist named Dr. Thomas Blom.

You private messaged me and I responded to you there, if you check there I think you will find it.

I did tell you in my private message to you ( you had private messaged me and asked) that he had diagnosed me in his office with a clot in my right arm again on Monday the 19th of June. I also had told you in my private message to you that he was able to make this visual diagnosis based on the fact that my arm was quite swollen and the veins in the lower extremity ( underside of wrist) were "engorged" indicating a lack ir restriction of blood flow.

As I also told you in my private message, he ordered a Doppler sonogram. The sonogram was at 4:45pm. That morning, as I told you, I think I may have had a small PE from that arm hit my lung. ( same side as arm.) I'm just not sure.

The Doppler scan of arm was clean. It was too late to call dr office to ask about lung and it was feeling better.

I did not have the report of scan- I still do not. I have not seen doctor. Only a phone call. I flew back to Texas late last night. I want to arrange for a copy to be sent to me. I want to read it it mentions " phlebitis, thrombophlebitis, or vasculitis."

These have been detected on my sonograms before, and mentioned. I don't know if they cause the swelling g Dr Blom saw or not. So I can't answer your question easily or straightforwardly.

I see a vascular surgeon on July 6. Dr Blom is requesting an additional consult. I intend to ask these questions at this time and then answer appropriately and thoroughly.

KellyInTexas
KellyInTexasAdministrator in reply to KellyInTexas

Well, Cindy- I was curious as to my messages so I just checked- I was having trouble with someone else's Private messages not going/ coming through while I was in Princeton. I couldn't even get phone service!

Sure enough - my private message to your response want in my log.

My internal medicine doctor in Princeton was Dr Mendu. When I first saw him upon arriving in Princeton my INR was 2.7 so he had me inject with the LMWH and he got a heme on board stat. Dr Thomas Blom. He's very good in my opinion. Better I think than anyone I've seen in Texas. He has had quite a few APS patients in his career. ( I'd place him in about 45 ish.) Two have gone into CAPS. These patients he sends to Rutgers. Apparently there is a whole hematytic specialty wing there in the hospital.

I asked quite a few questions. I took it from the bottom to the top with basic questions. Yes, APS is a spectrum disease. He woukd place me on the high mogderate going to severe end due to it starting with thrombocytopenia at 18 months, plus all the multi organ involvement I have from multi miscarriages, seizures , ( micro clots in brain= arterial involvement) probable TIA's, balance broblems, optic nerve death, plus small clots to bowels involving ileus and multiple surgeries, to multiple large DVT's.

I asked him if I were his full time patient would he recommend starting any kind of additional auto immune suppression or modulation other than the plaquinil which I'm already on. He said in my case, absolutely. He would begin IVIG.

I have additional info , for general knowledge bout will save gor general postings when I have more info and more rested eyes. And have seen vascular surgeon.

Glad to hear from you, didn't mean to upset you but was concerned. It sounds as though you gained good information . It's great you didn't have to be hospitalized and could find some time to enjoy your family, now you can continue on a positive journey. High hopes for you. 💪💪stay strong!

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