Needing answers re: Hughes Syndrome

[thumbtac]

I have Hughes syndrome also called APS I have no balance I black out and shake can't find a Dr that knows what to do trying to go to mayo but I live in AR and insurance will not pay they want  $5000 wondering if anyone has been there 

[Yllek]

Hello

I'm sorry to read you are having such a hard time. This is a very friendly site and I'm sure the very knowledgeable  people on here will help you out as much as they can. I'm in the UK so don't know where AR is? Is it Arkansas? 

Good luck and hope you feel better soon xxx

[thumbtac in reply to Yllek]

Thanks for your help 

[daisyd]

I don't know if this will help, but I have epilepsy I think caused by Hughes syndrome and had severe balance problems along with medication for my epilepsy which were blank spells.

I am now on hydroxychloroquine which is fantastic stopped my balance problems 

I am also on Warfarin which helps with my brain fog

Hope you manage to get things sorted out

[thumbtac in reply to daisyd]

Thanks for your help 

[Manofmendip]

Hello and welcome

Where are you from?  This information will help people on here to help you.

Dave

[thumbtac in reply to Manofmendip]

Thanks for welcoming me! I am learning to "get around on this forum" I am in United States, small southern state of ..Arkansas!! 

[GinaD]

Phone your insurance company.  Arm yourself beforehand with your blood test results, and an array of medical documents from the past year or so.  Point out to them that a trip to a doctor who is on the APS Action recommended list will result in a therapy that works for you.  And an effective anticoagulant therapy will reduce the number of Doctor and hospital visits and will therefore, save them money.  Point out the dangers of progressing to a major stroke or cardiac event- or even a blood clot in the hip bone and the resulting hip relacement, and point our again to them, that their insistence that you must stay local and in network makes no financial sense. 

If your first insurance contact brushes you off, ask to speak to the supervisor, and repeat and repeat as necessary.  Insist on a written denial of service letter which explains in detail how and why referral to an APS specialist is justified in their eyes.  Demand  to know if their industry has done any research on the financial cost/ benefits of treatment under an APS experienced doctor. 

And I'm not familiar with Arkansas insurance rules, but phone your state department and go through all this with them and ask their advice in how to handle getting out of state treatment for a poorly ubnderstood, but still usually treatable disease.  Be prepared to phone your State legislator's office as well.  

Good luck.  

[thumbtac in reply to GinaD]

OK Gina D!! I'm learning my way around this forum and how it works...Thanks for your very informative reply...my wife thinks exactly like you and she is trying to multi task in all this.. taking care of me, attentive to all Dr and ER visits which is 60 miles away from home. We have a 14 yo daughter also. She has called mayo in Florida campus..of course they tell here out of network so now we are awaiting a call regarding financial aid in the research dept since this is so rare. She has a sears catalog of all records except the ER visit Mon...then she will be armed for the insurance Ambetter of Arkansas- US. I've just been waiting and now the ins will make it even longer what to do in mean time?!! My wife states "with God all things are possible!" HE doesn't work on our time!! Again thank you for even be in intrested in helping me...

[MaryF Administrator]

Hi there, this is a list we recognise.   apsaction.com/   MaryF

[thumbtac in reply to MaryF]

Thanks for this link

[GinaD]

She does not have APS, but a neighbor of mine went from near death to recovery due to her trip to Cleveland Clinic.  Both her and her husband speak highly of the diligent care and compassion they received " from the moment I pulled into the parking lot.  Really!  From the parking lot on we were treated like royalty." ( he is a Brit ex-pat so he knows how royalty are treated.) 

If Cleveland Clinic  is not covered, a call to them might provide you with advice on how they might  see you, or alternative providers.  ( Of course, an email to APS Action might help also in that regard.) 

[thumbtac in reply to GinaD]

Thanks for your help 

[pauline19]

I agree with Gina D's advice-- all insurance companies have "case managers." Just like "customer service" in a store, "patient liaison" in a hospital, "case management" is actually LIABILITY or RISK MANAGEMENT. They're there to save the company MONEY and minimize their risks. Call the insurance company and REQUEST a case manager be assigned to you. 

Search on Pubmed (National Institutes of Health medical research database) for information SPECIFIC to aspects of YOUR CONDITION.

I was seen at Mayo Rochester three years ago, and my son and I had to drive cross-country. I had consults in 6 departments and it was ABYSMAL. Only ONE doc gave me any info that was helpful. I should've gone to Vanderbilt in Nashville instead. Really. 

At ALL "Ivory Tower" medical centers (and I live only 25 miles from 3 of the most "prestigious" and "famous" medical centers in the US) and EVERY SINGLE ONE almost killed me, literally! Search online for ANY DOCTOR with Hughes expertise. Don't assume the big name place will REALLY HELP YOU. What I realized was that the doctors at these prestige centers are mostly BORED. Yes- they're BORED. If they're at a place like that before say, 45 years of age, they're already at the top, there aren't any new challenges, no where better to go! So you sit there and attempt to explain why you merit their interest, but they've heard it all, yawn, take their personal calls, and it is soon obvious that they're not going to COGITATE just for YOU!

My sister lives in Houston. Ten years ago, she was a teacher and pulled into her driveway after school and while getting out of her car, her legs gave way. She laid there for 3 hrs before her husband came home and dialed 911. She was taken to the world-famous MD Anderson, MRIs and X-rays and CTs were done. Nothing. Zip. Nada. She left in a wheelchair. Her husband (a VERY WEALTHY man) spared no expense, taking her all over the US. Hundreds of doctors reviewed her imaging, talked to both of them. Five years this went on, dozens of images, nerve tests, hundreds and hundreds of blood tests. Finally a doctor tried to convince my brother-in-law to put her into a mental institution since it HAD TO BE PSYCHOLOGICAL. But he said, "My wife is NOT MENTALLY ILL!"

Finally he took her down to Galveston to see a Neuroligist who was 70 years old. He said, let's get you up here and take a look. My sis said, "we have a stack of images with us..." But the doc said,  "I just want to see you with my own eyes." He pulled up her shirt and ran his finger down her spine, and said, "Here it is. You have a meningioma on your spinal cord." Her husband looked and the doctor took his finger and held it and guided it down her back and he felt it too!

The MD said he'd send his report up to the "geniuses in Houston who have discarded physical observation as a diagnostic tool."

It was a 12 hour surgery and found that they had also missed congenital hip dysplasia, and replaced her hips. It took her 3 years to RE-Learn how to walk.

Lesson: The "BEST PLACES" are often awful. Don't expect them at Mayo to even acknowledge you're even unusual. They missed EVERYTHING in me! I've been told by so many doctors (after they read the Mayo record), "wow, how could they have missed X, Y, Z??"

Just remember that a local doctor who CARES ABOUT YOU, can often guide you in your OWN assessment of your own case, and the "expert" won't know YOU. What about Barnes or Washington Hospital in St. Louis? Both GREAT hospitals. Hughes is not so rare that there wouldn't be SOMEONE familiar with it in most metro areas....

Keep us posted. 

[thumbtac in reply to pauline19]

Thanks for your help 

[jetjetjet in reply to pauline19]

great Pauline --very interesting story to tell.

[edgewater100]

You need to come to the University of Kansas in Kansas City, Kansas, I went to Mayo 2014 and they were not as much help as Kansas University, make an appointment at the  rheumatology and immunology clinic, thier  main number is 913-588-5000, also make an appointment with either Dr. Osgood or Dr Richard Mundis at KU as well, Dr Osgood treats my APS he is an Hemotologist , I also go to a Neurologist at KU since having strokes from APS, her name is Detra Ford.  We are not far from you, hope this helps best of luck😊👍

[thumbtac in reply to edgewater100]

What med AR they treating you with

[edgewater100]

warafin for the APS, I also have lupus so I take Ned's for that as well

[thumbtac]

Thanks to all that is sharing their input...I spend my days searching for answers. I can not accept that I have to live like this. I wake up shaking and of course a headache that never goes away. My visual disturbances is scary...I have shared my diagnoses of APS and my treatment is xeralto, neurontin,  prednisone, and Xanax when needed. so why are all these symptoms here with me daily?  Extreme fatigue, balance and ccoordination...shaking spells and fogginness. Just ranting and praying for wellness! I need answers ....

[Apswife in reply to thumbtac]

My husband was diagnosed recently with APS. He had horrible headaches, vision issues - he said it was like a fuzzy tv. He would have to stop and sit down. He would totally forget a conversation from 2 minutes earlier. He also had severe joint pain. He was also on xeralto - I would recommend you get off that right away!  He had 5 ER visits in 60 days and all they would do is treat the symptoms. He was fianally diagnosed with APS And got 5 days of iv steroids.  He has since done Rituxan treatments which kills the bad half half of the white blood cells. Back to warfarin too and he is almost back to normal after a year of feeling bad. Symptoms started a couple of months after he started xeralto. 

[Lure2]

I hope you will soon find someone who understands your problems and who is an Expert of this illness. It is a fight really but our life is worth it. I guess you agree with me.

 We need anticoagulation as we have too thick blood with APS. I use Warfarin and selftest and feel fine now but it took some years that probably damaged my body somewhat before I was anticoagulated.  Sometimes we do not even notice it. 

My best wishes to you from Kerstin in Stockholm

[thumbtac in reply to Lure2]

Thanks 

[thumbtac in reply to thumbtac]

Wat Dr are you seeing 

[Ylmom]

Hi thumbtac! I am not sure if I can help but I also have APS and from Arkansas Go Hogs! 😉 It has been a crazy journey for me as well so I would be happy to answer any questions about Drs in our area...I have been to a few different places. 

[thumbtac in reply to Ylmom]

Ylmom...you may be a blessing. I have never had any help problems until age 55 at which my wife carried to ER chest pain blacking out, of course they done a cardiac workup found nothing except a leaky mitral valve, which they repaired and that's when "it all started!!" I can not take warfarin,or Coumadin because I have a positive antibody for heparin meaning it does not work on me....therefore Xeralto is the only answer to treat the coagulation issue. I experience many symptoms with extreme fatigue DAILY, as though I have the flu. I am now having uncontrollable shaking that last 4-12 min daily and we yet got an answer for that. I've had numerous MRI, CT and last year EEG study which showed nothing but didn't have a spell during the actual test. We 

AND ANYONE ELSE,

Thumbtaf 

[thumbtac in reply to Ylmom]

Please let us know if you receiver /?

[thumbtac in reply to Ylmom]

Wat Dr are you seeing in AR

[thumbtac in reply to Ylmom]

This is thumbtac ylmom I live in DesArc AR wat Dr are you seeing in AR thanks

[Laurie-thumbtacs in reply to Ylmom]

Hi my fellow Arkansan!! 💥your help may really be what I need to keep going💥 I writing this for my husband we are currently seeing dr beck hemotologist once a month for a CBC,  but he finally witnessed the uncontrollable shaking.... sent him to ER by ambulance and this is what I been telling him a deal with on daily basis!! He has had EEG study's shows no seizure activity but he never had spell like he does now!!!

Looking for answers!!!!!!!!!!

[Laurie-thumbtacs]

ATTN: Ylmom: we are anxious to hearing from you, being from Arkansas... With Doctors, test, and how your living day to day is now? This is totally taking a toll on us as a family.....

[Lure2 in reply to Laurie-thumbtacs]

If I were you I might put a new fresh question on our site about help in Arkansas. Also write a little more about your antibodies, when it started and when they operated that mitralvalve and everything "started" and also other tests and Drs you have seen. High bloodpressure etc? Were you anticoagulated before the operation?

Are you allergic to Warfarin and Heparin? Most of us are better when properly anticoagualated

I also wonder if your "spells" started after a new drug or something? How about Xeralto? There are a lot of helpful and knowledable members here who may give you some answer.  But we are no doctors!

Best wishes to you two from Kerstin in Stockholm

[Ylmom]

Hi! Sorry for the late reply I have been out of pocket! I so understand your frustration with symptoms. The admins here gave me a link that led me to the link for the APS Drs and I see in Dr Johnson in Memphis at the West Clinic. He has been such a blessing. I had several terrible experiences in LR and after a year of that, I realized I needed to move on for fear of another stroke. I take Eliquis. I am new to the APS community and know it is not the normal medication for our syndrome so I was nervous about trying it but to the point of so thankful I had a dr that knew what he was talking about I would try anything. I have access again to my phone(I do not have home internet service😁) so please feel free to message me or ask anything! Again sorry it took so long! 

[thumbtac]

This is Thumbtac is Dr Johnson in westmemphis AR 

[Ylmom]

Thumbtac I just messaged you. Let me know if you recieve it I have never used the message before

[thumbtac in reply to Ylmom]

Yes I got your message  I was hoping your Dr was in AR my insurance only covers Ar

[mylafont]

apsfa.org/apsfadrlistsc.htm#AR

This website has some good info even though the forum connected to it isn't active.

I have a lot of neurological symptom with my APS (some as you describe) and seizures in addition.  The particular anti-seizure meds I'm on helped quite a bit with the other symptoms as my neurologist described them as being migraine complex. 

Your hematologist should be treating your "sticky blood" but you should also be seeing a rheumatologist and with the other symptoms you describe a neurologist.

I see my rheumy every 6mo to a year but see the neuro every 3-4 mo.  It took well over a year to get diagnosed. Then at least that to get everything leveled out enough to feel halfway decent.

I still feel foggy and tired sometimes and the loss of my memory I hate too, but that's life with APS. I've had to retire from a job that I loved, but I believe God put me on another path for a reason and I am enjoying life at home with my husband now. If it takes me a long time to do something, I have that time now.  BTW, I'm 53 years old.

Keep pushing, you'll find answers. I'm lucky I found pretty good docs, that at least knew enough. I wish sometimes they knew more when I have specific question, but they know how to treat me.