Sticky Blood-Hughes Syndrome Support
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Could I have hughes syndrome? Help

Hi guys and thanks for allowing me to join you.

My name is Chris I'm 26 years old and have suffered with daily migraines for nigh on 10 years now. In a nutshell it's totally debilitated my whole adult life and I'm just at the end of my tether now. More recently I have found that other symptoms include poor circulation in hands and feet, extreme fatigue and tiredness and irritable pains/niggles in the heart area. I'm finding that that my memory is also becoming terrible.

I have been to see doctors/neorology specialists and tried a cocktail of high end 'migraine preventative' drugs. No luck there. Have had blood tests. No luck there either. The thing is nothing seems to touch my migraines so that's why I'm starting to doubt whether it is migraine? Why does nothing take the pain away even short term? I've also had an MRI scan which again proved to be normal.

I need some help guys. I just hope some of you can contribute some input/guidance. Could I have this disease?

23 Replies
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HI and welcome, firstly where are you located? That will help, as if you do have this disease you need a specialist qualified to help you. If in the UK we do have a list.

Please see the three blood tests below and the symptoms explained. Often other family members will have autoimmune diseases including thyroid. As well as the tests for Hughes Syndrome/APS we do also suggest testing your vtaimin D, B12, Iron and Thyroid for the complete picture.

londonlupuscentre.co.uk/hug...

MaryF

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Thank you Mary. Yes I am indeed from the UK. Dundee, Scotland specifically.

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Our list of specialists is on the right hand side under pinned posts. MaryF

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Thank you.

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Welcome, you have good advice from MaryF. Try and get to see a specialist and get all the blood tests done. xx

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And in addition to the good advice above, I wonder if you have ever tried a simple baby aspirin daily for your migraines? If so did that help at all?

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Hi there. I've tried aspirin sparingly. Not over any length of time particularly. Have taken 1 today and will continue to do so see if there's any change. Thanks.

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We all if on it do take it on a full stomach, and also alert our GP's we are on it, if they have not suggested it. MaryF

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Welcome to our friendly site and I hope you will get the help you need from us.

I started with Baby-Aspirin (75 - 100 mg/day is enough) and I took it with food as to my stomach.

It helped my neurological symptoms for a couple of years but later on I got worse and finally I started Warfarin which has been my "lifesaver".

They have never seen any clots on me as I have micro-emboli and micro-clots etc and they are not seen on a Scan today. Still they do harm to the body.

With a Specialist of autoimmun illnesses who knows to give you the right answers on your questions and who also knows how to treat you (he will also know that we have micro-clots etc) you will be much better.

Best wishes from Kerstin in Stockholm

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Forgot to tell you to read "Sticky Blood Explained" by Kay Thackray as I usually do when we have a new member on our site.

Kay has APS and writes about the different symptoms and how it is to live with this illness. It is written some years ago so you can not find the newest oral drugs in it but we still have the same symptoms. It is a book also for relatives to better understand this illness. Many members here like that book very much and so do I.

Kerstin

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Hi Lookingglass91,

I also started with explosive headaches as a child in the 1950’s.

When I was 13 or 14 I started taking regular aspirin, two at a time. The aspirin ‘melted’ my headache away.

I am currently taking about 2 aspirin two or three times a day. I have tried Tylenol but but it did NOTHING. I also take Coumadin. I am not suggesting you do as I do, just want to let you know what I have been doing that works for me.

In the 1950’s and 1960’s, aspirin was readily available and there were not so many medical taboos associated with it. For me, aspirin works better than an opioid.

A year ago I added low dose naltrexone at night to help with headaches. (lowdosenaltrexone.org). It has decreased the severity of headaches. Before naltrexone, I was taking 8-10 aspirin a day.

Good luck in your journey.

Nancy in West Virginia

PS: some of my Italian relatives live in Glasgo!

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Thank you so much for the kind replies it really put a smile on my face :)

I don't know if it was the same as you ndstephens but on my left shoulder/back of neck I have such a tight feeling as if someone is tangling up my nerves and pulling. This then goes right up to my head and I find it hard to function! I'm hoping it's all linked. I'm pessimistic in the sense I get excited I might have found what I have but it never comes to fruition. I just hope this is it. As bad as that sounds. Thanks for your kind words.

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Lookingglass91, after headaches my next symptom was trigeminal neuralgia in my left lower jaw and left side of my face. It was like a combination electric shock/toothache that continued 24/7 for 8 years. I don’t know how I survived.

It turns out that I had microvascular clotting inside my left jaw bone which caused bone cells to swell pressing on the nerve that goes to all teeth on left side. This pressure on nerve also referred pain to other branches of the same nerve—nerve to left upper jaw and to left eye. At times, it felt like a knitting needle was stuck in left eye.

I now also have microvascular clotting in heart (heart failure) and kidneys (stage 3 chronic renal failure).

My INR recently increased to 3-4 so I am hoping the organ damage stops.

Nancy in West Virginia

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❤️👍🏻here’s lookin at you, kid!

( and those organs of yours!)

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I have been on Aspirin for a long time. and my neurologist. said in no way should I take opioids. I don't have the head aches, sharp stabbing pains were in my head thankfully they have eased. I believe Micro Clotting is my issue too. I will no doubt be on Warfarin in the years to come. I too have never had a major clot, but lots of little symptoms which can sometimes. drive one crazy.

Good luck. This is a great site to widen your horizons . when the health systems around the world cannot give definite answers on some of these terrible symptoms. YET! (one day they might)

We all live in hope the answers come soon... Stay positive. Linda

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Hi Linda,

Reread what you wrote the other time on our site now.

You have so many diagnoses and I wonder if you could find a Specialist of autoimmun illnesses who knows about micro-clots and sero-negative antibodies and how to differ MS and SLE/APS perhaps. Also to try Warfarin right away as I think you need that (you say it yourself).

I hope you are ready to eat green vegs also if you start Warfarin as they can help you to keep the INR in range. Also try to selftest and find out it there is a big difference between the vein-test at a lab and your CoaguChekXS-machine? It often happens for those who have Lupus Anticoagulant poistive (like me). You look great when i look at your photo by the ocean!?

Keep well!

Kerstin in Stockholm

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I am due to see the Immunologist. and the heart specialist in the next month. Generally I am good and get on with any minor issues. I Agree totally with your outcomes. Unfortunately no such specialist here. I have a great doctor and I am leaning all the time so is she. I was put on Plaquinil the 3 month ago month by immunologist . 1/2 tablets. seemed to be OK. was suppose to be a modulator ????? Once I went on the full dose I realized my vision and muscles seemed to play up, so I soon came off that medication....

As far as I can work out. I have Systemic Lupus and was diagnosed APS years ago. When MS was diagnosed last year 2 neurologists. decided due to the layout of the lesions APS was more likely to be the culprit. I believe. nobody really knows. I always mention warfarin but no specialists. so far will go for it.

I am doing well on the diet, energy levels good and good general health. Just minor tingling tinitus etc... I thank you for your persistence and one day if all does not settle Warfarin will be the one...

Kind regards. Linda

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Aspirin 100mg. has been my main blood thinner. Plavix seemed to severe.

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What autoantibodies have they tested positive on you so far?

Warfarin has been our lifesaver for several of us so please do not forget that.

Kerstin

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Hi,

Could you not speak to those Doctors you have, and that you obviosly trust today, that you want to have an LMWHeparin trial?

That way you should find out if you feel better on an anticoagulation therapy than on only Aspirin. Most of us have gone that way.

I my case the Specialists wanted me on Warfarin but I was reluctant as it was "ratpoison" and at that time I did not understand our illness as I do today.

I will never ever regret I tried Warfarin as it has saved my life.

Kerstin

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Hi Kerstin you are very patient,

I had a baby in 1976 with a retained placnenta, and lost a baby in 1999. Possibly the first alarm bell. Then 1996 lots of inflammation symptoms appeared. worst ones which I could see physically see were in the right eye, this made me go for investigations.

Few of the tests. then that may be relevant.

August 1998 Discussion with 2 specialists. in the UK. Dr Lilic Neurologist and Dr Fordham Rheumatologist with Dr Graham Hughes St Thomas's.

Linda morrel was diagnosed with SLE some 7 years ago ( 1991) managed basically with Steroids and pain killers.

In addition 1998 High levels of IgG and IgM cardiolipin

(over 50 and over 100)as well as very high titles of dsDNA antibody (317, normal range 0-73). lots of other results not sure if relevant. 1998 Dr Lilic and Dr Graham Hughes said I had Antiphospholipid Syndrome

It was suggested to take Aspirin and Dr Graham Hughes. suggested I make my own decisions on whether to take warfarin. Like you I chose not to. All these years on. I am glad I didn't take warfarin due to all the complications it would have caused . I had 10 years free from it all. Then during a stressful period of my life things started to appear. Joint pains. etc....

Then 2016 I was diagnosed with many lesions on the Myelin Sheath with MRI Scans. A spinal MRI was clear The spinal fluid in the Lumbar Puncture showed a positive which first led to MS diagnosis then 2 neurologists said due to probability it would be APS. Nothing really they could do, only to suggest other specialists. Neurologists more or less agree Warfarin may not make any difference and it may have increased problems of the complexity of using warfarin . Immunologists say the same..... mmmmmmm.....

I have been right through my tests for you and found few relevant comments from the Lumbar puncture report

12 jan 2017. This is consistent with immunnoglobin synthesis in the CNS. e.g.: Multiple Sclerosis chronic infection SSPE

Then I also found amongst many tests. Vit B12 was 212

Ref range. 133 - 680 within the normal range

Anti Nuclear Antibodies were positive

Homo genius 40. Ref range. <40

ENA Screen Negative

Anti dsDNA ( RIA) 30 Ref range <7

Finally found the INR 1.0. Ref range 0.9 - 1-2

Prothrombin Time. 11 Ref range 9 - 13

APTT. 35. Ref range 1.7 - 4.5

I had my doctor check out my thyroid few months ago but can't find the report I believe all was good. My vitamin d was down so now addressing that.

I go to see my heart specialist next week so won't do anything till I see him and the immunologist whom I see 21st Nov.....

I hope some of these results clarify things for you. they mean absolutely nothing to me...

I thought Heparin was Plaquinil which I am not willing to take- but now read it isn't. I will mention Heparin to the Immunologist.

Thank you Kerstin for your interest.

Kind regards. Linda

PS Yes if you see me I am good and generally healthy, off to play golf in a moment...... Just weird things happen.... like most of the Auto immune sufferers. .......

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Hi Linda,

I can see you have not been just sitting in a sofa doing nothing and you have even seen prof Graham Hughes! In 1998 (some years ago that is).

You know that I am not medical trained and I hope someone else could look at your answer here who knows better than me.

MaryF always speak of taking all the tests for Thyroidea not only TSH and also Vit D and B12 must be ok.

See to it that you do not go around with too high bloodpressure as to your heart. You are living a wonderful life and are active which is very important.

A big Hug to you from me!

Kerstin

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Hi Chris. When you had the blood tests done did they check your INR? And if so what was it? I'll wait for your answer before I go on to reply further.

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