Looking for specialist for Hughes around Baton Rouge LA

Hello! I am looking a specialist for Hughes syndrome around Baton Rouge LA or if I need to go out of state any recommendation on a DR. or a clinic. I would greatly appreciate any recommendations or advice. Also in the United States are rheumatologist, Hematologist or is it another type of dr that specializes in Hughes syndrome.

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  • I've yet to come across any in southeast Louisiana. I'd be interested to see if anyone responds. you're the closest I've come to anyone else having APS. I'm in Houma-Thibodeaux area. I've asked my Ochsner doc if he could give my name to his other patients so we could communicate for support, of they choose, and he said he could not do that. Same with coumadin clinic.

  • My dr said told me if I didn't get better the next step would be the clevand clinic. It seems that I am his only patient with this being my primary. What type of dr are you seeing. I have been to a few and it seems nobody now anything about this.

  • My story is long as it took 14 months for diagnosis and I was almost written off. I won't get into it, but I was actually diagnosed by a MS neurologist. Then once stabilized moved on to a stroke neuro. I have a rare form of APS that only affects my brain. I have seizures to keep under control. I do still see a rheumatologist but only once per year unless I have rheumy symptoms.

    You are correct. Most doctor, of anything only know the very basics about APS. I educated myself and often times know more then the docs.

    Thankfully I am currently fairly regulated between the seizure meds and coumadin clinic. I do wish we had an APS specialist somewhere in this area to consult with.

    How long have you had APS? If you can afford it and can find a specialist there, it might not be a bad idea to go there to get and find out what you need. What meds are you on?

    For me, the biggest thing has been diet consistently and the addition of the seizure meds. They eliminated most of my brain symptoms.

    I still have, fog and confusion, forgetfulness, a.d.d., etc, but not so much that I can't function like before diagnosis.

  • I was finally diagnosed in June with Hughes in June. It was 2009 or 2010 when I really started having problems then i just starting getting worse. It was September 2015 when I got where I could hardly work anymore. I am on warafin, plaquenil and cymbalta. The plaquenil helped a lot because it seemed I would get a virus or something and never get over it. The warafin has made the biggest improvements with the pain, circulation and helped with the memory and Brian fog. The dr said I wasn't getting enough oxygen to my brain that was causing the brain issues, he even drug tested me. Looking back if I would have saw my self I would have thought I was on drugs. I went from where I could calculate anything in my head to having to think hard to do simple math, even my speech was effected.

    I have learned more from this site in the last two days than from anywhere else. You said your diet helped. Is that for the Coumadin or something else. I have a lot of swelling in my liver and stomach and i found out from this site about gluetin diet which I think is causing my stomach problems so I going to start staying away from gluetin so if there something else with my diet you think would help let know. I am going to keep searching for a specialist close but it looks like Cleveland might be the closest. I will let you know what I find. I am so glad I got on this site.

  • The people here know quite a lot. The APSFA website has a lot of info too, but the forum is not active.

    The diet part of it is related to the warfarin in that you have to eat a consistent amount of vitamin K. I know it sound counter productive to the warfarin, but it actually gets adjusted by who ever is monitoring your INR and helps keep things as in order as possible as it can be with APS. No alcohol consumption is key as well. I haven't done anything in the way of gluten. My INR isn't as consistent as I would like it to be but it usually doesn't drop down to stroke range and I don't mind if it gets above my high end. If I miss eating VitK, I have a supplement I take, but I prefer the taste and nutrients to the edible VitK vs. The supplement.

    The stroke neuro was able to get most of my major symptoms under control so my desire to seek out a specialist kind of went by the wayside. I still have bouts of fog and confusion that are typical with APS and have learned to live with them and don't push myself when I can't do something and have learn to grieve what I have lost from this disease and move on. I'm lucky in a way, as other than my brain, my other organs are not at risk, as long as I keep the seizures under control.

    I'm encouraged to see there maybe someone at Tulane. Are you considering checking them out? I'm praying you can find some who can help you get better, or at least find your "regulation" and you don't have to go out of state.

    Keep me posted...

    There is also a Facebook page that is kind of like a forum. I'll msg you the link to it.

  • Hi Mylafont,

    I do not agree with you; how do you know that your other organs are not at a risk when you are not properly anticoagulated as I do not think you are just now? How long time have you had your APS?

    You notice, when you are on a high INR-level (3.5 - 4.0 or even a bit higher), that you have NO neurological symptoms of confusion and brain fog etc You should not accept "learned to live with them" at all. I think you should selftest and monitor your own INR as I do if possible. We also need a Specialist with APS. We have learnt here that the Neurologists do not "get" what APS is about - too thick blood that has to be steady and properly thinned.

    As to myself it started with neurological symptoms 16 years ago, but today I have Pulmonary Hypertension and leaking heartvalves. Since 4 years back I selftest and keep a steady INR on Warfarin.

    If I go under a too low number of INR I have to take a Fragminshot. If I could not do that I would ask for Fragminshots daily instead of the Warfarin. We have too thick blood that must be thinned ALL THE TIME.

    Best wishes from Kerstin in Stockholm

  • My other organs are not at risk because I have a rare form of APS that only affects my brain. I probably had APS for about 3.5 years, but officially diagnosed 2 years ago. It took about 14 months for docs to figure it out. It's why my main doctor is a stroke neurologist. I am followed by coumadin clinic who monitors my INR and I self test at home. I am properly anti-coagulated. My therapeutic range is 3 to 3.5. Minor brain fog, and confusion are symptomatic of APS and don't have that much to do with my INR....and or lingering damage from seizures and stroke damage. I keep a daily diary of everything I experience along with my INR results from both home and lab testing.

    What I talk about accepting is my loss of memory, some fine motor skills at times, my career as I had to retire, etc. When I'm tired, it's harder to do thing, but I do get by and it's not as bad as it sounds. My hand writing is not as neat as it can be or, I may hesitate before answering a question.... little things here and there.

    I am able to exercise just about everyday, but I don't push myself, I still have balance issues at times, but I deal with things one day at a time and do the best that I can.

  • I do not believe in a rare form of "neurological APS" if you really has got APS with the antibodies and typical symptoms. MS and APS are sometimes mixed together.

    You do not have a Specialist either as the Neurologists tend to see it as a "brainproblem" which it is but also our too thick blood attacks ALL the body.

    I was without proper anticoagulation for several years and had several neurologists trying to help. In my case the micro-embolies and TIAs I had was not seen on the Scan as they are too tiny. Microclots go with APS.

    This is a new illness and the Doctors worldwide starting to learn and listen to prof Hughes.

    So if you are diagnosed APS with symptoms and/or antibodies you should have a higher INR than 3.0 - 3.5. Try an INR between 3.5 - 4.0 and keep it near 4.0. We do not bleed from this illness but clot.

    I get symptoms when under an INR of 3.5. When I am under that number I have to take a Fragminshot to avoid PEs and TIAs etc. Also I wonder if you have doubletested your fingerprick test with the machine with a test in the vein at the hospital lab? It can differ a great deal so important to know.

    Brainfog and confusion are symptoms of APS and anticoagulation is the answer! If we have too thick blood we get the symptoms. Did you listen to prof Hughes the other day here at our site?

    I have primary APS (no other autoimmun illnesses) tripelpositive with high titres.

    Wish I helped you.

    Kerstin in Stockholm

  • I will look up prof Hughes' talk and listen. Hopefully I will learn new info I can speak with my doctors about.

  • Is the talk still linked on the site? I'm not finding it?

  • You must scroll down (at least I do like that) 10 days ago

    "November - Prof Hughes question of the month" as an answer to wittycjt.

    Hope you can find it and listen to what he shortly says.

    Kerstin

  • Thanks... I found it. But there isn't enough there for me to present to clinic for them to raise my INR range. Especially with him saying that it is not universal. Do any of his blogs go into more detail about the 3.5-4 range?

  • I didn't believe I only had it in my brain either. I had 3 doctors tell me this was the case including an MS specialist. She specifically said I do not have MS. I was with the MS specialist for the first 9 months or so after diagnosis of APS. My INR was raised until MRI changes stopped. Then I was moved to the stroke specialist. Then I was regulated on seizure meds and the rest of the major Neuro symptoms stopped.

    There IS a form of APS that is vascular in nature only in the brain, unless I have 3 different physicians giving me bad information. It is rare. And I have come across a few others like me with it only in the brain. I primary APS and am also triple positive of the three antibodies

    I suppose I would benefit from a higher therapeutic INR, But I would have to complain to the clinic of major fog issues which I don't have, and all the research I've done shows it's a normal part of APS in and of its self.... and it does not interfere with my daily life-routines.

  • I am also triple positive incl Lupus Anticoagulant.

    Can you selftest without difficulties with difference in the fingerprick test and the veintest. It differs for me when I am not too high in INR at about 0,8. If I am very high the difference is even more. Important of course to know about this difference! Also the difference must be the same every time and only differ very little.

    The selftestingvalue is higher than in the vein at a lab. I had to doubletest many times at the same day before I was allowed to take over the responsibility for selftesting myself.

    If possible talk to a Specialist. Tell your Doctors about what prof Hughes says at least. If you try a higher and steady INR (I selftest every second day) please tell me how it goes for you. You could also try LMW Heparin instead of Warfarin.

    Good that you do not have very high bloodpressure as i had before anticoagulation. I had PEs that I did not know about. Later on I had Pulmonary Hypertension and leaking heartvalves. Hope you can avoid these things, that is why I say this to you. It is a tricky illness and we are triplepositive and highrisk.

    Best to you from Kerstin

  • I do self check and vein check, but only once per week. My medical insurance only gives me enough supplies for that with a few extra for errors. My machine is usually even with the lab or .01 difference. The most difference is .03.

    I am also LA positive. My MRI did show the TIA or micro clots... lots of them. The MS neurologist kept raising my INR until they stopped showing and the MRI stopped changing. It was explained to me how delicate the balance is with INR range is, even with APS patients.

    When my INR is too high, I get nose bleeds sometimes.

    I'm going to try to find the talk by Prof Hughes.

    Thanks.

  • Also look at his "December blog"!

    Good luck and hope we get a happy healthy 2017!

    Kerstin

  • Mylafont,

    Hey there! I'm sorry I'm responding to an old thread- but I'm just now seeing this and, like Kersten... this is really grabbing my attention. ( sorry to beat a dead horse here...)

    Ok. I won't go into a long winded story here, but I'm 48, have been dealing with APS since age 18 months of age, we just had no idea what it was.

    Mainly it started with micro clots to bowels in late 20's, miscarriages, etc.

    lots of NEUROLOGICAL problems as well. Seizures, migraines, TIA's and I'm loosing vision. Optic nerve neuropathy. I see four different types of specialized neurologists. One was even for MS mimicking issues because I had transverse myelitis symptoms. Not uncommon. I saw Dr Robin Brey with the UTSA system who is well published in neurology and the APS manifestation on the neurology of the disease process. I have dysautonomia and the beginnings of POTS. She tested that. Now linked with APS and Brain and autonomic nervous system. Dr Hughes has taken a new focus on this. And that's JUST neurology! I have gastroenterology, rheumatologist, cardiologist, electrophysiocardilologist, internist, blah, blah blah.

    APS is APS. It can cause sub specialized problems that are all related to APS.

    I'm in San Antonio Texas area. My team was having trouble getting the knowledge they needed regarding how to set my INR and get it to stay there so they recommended I go to London Bridge hospital to see the team of dr Graham Hughes himself. He was very hands on with my neurology overview conversation. I believe that if there had been a rare form of MS I would have been informed.

    Im not convinced my team in San Antonio is up to speed compared to London AT all. Neither are they! But I do feel apprehensive about any doctor telling you there is a ," rare form of APS."

    I've never encountered this anywhere. I will tell you that some systems and manifestations are more common than others.

    Perhaps this is what they are meaning.

    It makes me worry about your care...

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