Sticky Blood-Hughes Syndrome Support
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London Doctors/Differing Opinions

Hi,

Happy and. Healthy New Year to everyone. I saw a renowned Rheumatologist in. NY and another. hematologist. Both have different opinions. I am triple. positive no full clot but 6 Nerve Palsy that is considered a microvascular infarct. I also had neurological symptoms acutely but are better since on Warfarin. Rheumatologist says. no. clot no blood thinner and was dismissive. The hematologist said that if the eye injury was related and. I. am triple positive the risk is. greater going off Warfarin. than the bleeding risk and he wants to keep me on blood thinners.

I want to go to London to see Dr. Hughes but he doesn't see new patients do. you think it's worth going there? Any other doctors you would recommend?

Thanks!

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Hope APsnotFab responds for you. I trust her opinion! Good luck, Cindy

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Unfortunately some Drs especially in the USA will stick rigidly to the criteria which is sometimes not at all helpful. We on the other hand like to treat the whole patient taking into consideration not just test results but clinical history, symptoms and also family associated medical history which can, in the absence of clear results give good clear points in the right direction.

If you have had a good reaction to anticoagulation, are triple positive, then the absence of a clot should not mean dismissing what you have shown actually is benifiting you. Does the Rheumy expect you to prove his point by actually having a clot so you can fit into his box? If that is the case I know which Dr I would listen to.

I'll look to see which would be the most appropriate person for you if you decide to come to London.

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There you go. I agree you should stick with the hematologist who wants to keep you safe on the blood thinners. I wouldn’t risk a stroke...been there , done that and you can never go back. I hope you are able to stay on the thinners now. All the best, Cindy

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See Prof Hannah Cohen at University College London Hospital- she is the expert haematologist in this disease.

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Many of us on this site have reported a reluctance on the part of rheumatologists to acknowledge the ramifications of APS - AND the prevalence! Their reasoning goes: After all, if a lot of people have positive blood values from time to time then it must not be “real” ailment, right? Wrong. Crucial details about exactly what and how triggers APS have not yet been established.

Regarding neurological problems as resulting from APS: it was a peculiar gait called “Jamaican encephalopathy” which first clued Dr Hughes into the existence of our disease. Nerves need food and oxygen. And they need to have their trash carted away. When blood clots, nerves are deprived of their support system, resulting in pain, tremors, and poor muscle function. Why wont doctors acknowledge this ????

Again, I think doctors, who are intellectually conservative, just cant wrap their heads around a disease whose complex presentations defies simple, check list symptomology.

Good luck. ( And I’d stay on the warfarin if I were you. In fact, I AM staying on warfarin despite one doc’s pleas for me to quit.)

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Your reply to Rottiro1 interested me Gina.

You mentioned a peculiar gait.

This was something I found written in my notes about myself by a consultant in Bristol. This is the first time I have heard it in the context of Aps !

I shall most certainly be taking a closer look at "Jamaican encephalopathy" do you know why this strange gate is adopted with the condition ?

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This cane from a book wtitten by Dr Hughes and which I read many years ago. Dt Hughes was determined to find out what was causing this strange gaitwhich was often coupled with other problems such as brain fog and circulatory problems. He found the common denominator to be “almost luous looking” ( my words, not his) blood values.

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Best money I ever spent . I didn’t see Proff Hughes but on of his team . I am now being treat under one roof which was a problem before , much work afire now I go to Manchester . I to have neurological symptoms, dizzy heal , muscle weakness , nausea , losing sensation in my grip recently . my blood is well coagulated . I have no autoimmune disease running besides it .

It’s very hard to get some Dr to understand , I was put on tablets then taken off them by another and this was my heath they were playing with . Now I put my foot down . They took me off Clomazepan and I let them , big mistake as I was far better on them 🙁good luck

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Hi amy,

What anticoagulation drug are you put on at present and what INR after seeing the new Specialist?

Kerstin in Stockholm

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Who did you see on Dr.Hughes. team?

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Thanks Everyone. I am on. Warfarin INR steady at 2.5. I do understand that the Rheumatologist said that I don't have other trigger risk factors. like high blood pressure, cholesterol, birth control. etc but the hematologist looked at my whole story and doesn't know for sure that eye issue (which is considered a microvascular infarct) was. related but if it was the "tip. of the iceberg" and I am triple positive that the risk of bleeding is 10 percent but the risk of an incident without blood thinners could be as high as 80 percent. But most Rheumatologists say. no clot no Warfarin and that is just too black and white. Hematologists understand clotting and risk for thrombosis. Although Nerve Palsy isn't a common presentation there isn't proof either way whether it is related. I appreciate all of your information and support.

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Just so you’re all well informed I didn’t have any of the risk factors either. No high BP, slim , no weight issues, no hormones, cholesterol was perfect, no issues until the stroke and even then my BP was low and always has been, cholesterol’s : HDLs and LDLs still perfect never an issue.

My point is if you can do anything as far anticoagulation/ anti sticky with this disease, I would, even if just a simple aspirin every day if you don’t have any contraindications for taking.

I wish you all well, stroke free lives. As I said before, if it happens you can’t make it not happen.

Be aware just because you are on warfarin does not mean you cannot have another stroke it just “helps” to prevent one. Best regards, Cindy

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Amy, which team member physician cares for you at LB? I see Dr Natasha Jordan, but would be interested to see who she might consult with in the team about your nerves- as you and I are very similar, as you and I have discussed.

Something you just mentioned really stood out to me, and my doctors here just glaze over it even though they do the nerve conduction tests.

( rotirro 1- Nerve discussions could help guide you here. You had asked me a similar question about which doc at London Bridge re: nerve expertise and I now realize reading back I did not answer. My apologies- I’m not sure. If you read their CV’s- it will detail their particular areas of expertise.)

Amy: you said you are loosing sensation in your grip. I am also! I keep dropping things. I feel very clumsy holding things- like a toddler at times. Ive figures out square drinking glasses don’t slip and break as easily when I am washing up the dishes. I can hold on to them more easily.

What is the doctor at London Bridge telling you is happening? Does it tie into being off balance at times? I am also “ properly anti coagulated.”

( by careful with your optic nerves. Just a cautionary reminder. I’m sure it’s fine.)

Have you asked this LB doc about the possibility, or her or his thoughts about mild , safe immuno modulation/ suppression beyond plaquinil if you are properly anticoagulated yet still symptomatic?

Amy, are you actively actually visibly clotting? Detected by scans? ( I am but also nerves are. I’m having both.)

I believe I’m having more neuro cog decline as well- already established decline by neuro cog testings. ( I’m epilepsy patient so they are done at same time as EEG’s yearly. Language and memory is ... well. Not great!)

I’m just wondering what the neweest evolution in the thinking at lb is.

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Hi kelly

Gosh that is interesting . I went to LB as a one off private patient . I go to Manchester royal and see proff Hay haematology and proff Bruce Rheumatolgy , waiting to go to see new neurologist in Manchester 31st January . To be honest proff Hay has said nothing about any other possible clots even when coagulated well and Proff Bruce is being lead by him !!

I really don’t know what to do . I am on Warafrin , clopidogrel, thyroxine and Amitriptyline nothing else . I feel as though I was better on Clomazepan, feels like a chemical imbalance in my head . I am worse in the morning and usually fine by afternoon , start to wilt about 6 pm .

So good to talk to someone who understands x

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I had very bad cog function when I was first got ill but not diagnosed with APS . Things did improve with Warafrin. I seem to have these flares that pounce on me , one day I will feel great then I have ten days of feeling like I have gone backwards , sensation goes , weak limbs , nausea horrendous, brain mush , speech feels like I’m having another stroke but I know I can’t because of Warafrin , I just wish someone would say I have this disease plus this and I’m going to be fine 😤

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You are near Liverpool. Dr Vanessa Martlew (?) I think is her name... is quite well versed in keeping a high INR with APS. She has some understanding of nerve involvement also. ( easy quick traveling for you personally.)

She is In Liverpool. ( heme.)

I think you should see Dr Paul Holmes in London. ( neurologist.)

He does work in a limited fashion with Vanessa. He is used to the neuro cog dysfunction that accompanies APS.

Are you not officially diagnosed?

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