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Sticky Blood-Hughes Syndrome Support
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No one will help,

I was diagnosed with MS 2 years ago. According to MS neurologist, I was a slam dunk case. I am not so convinced. I have had bouts of daily headaches for years that they say don't fit migraine, but can't tell me why either. They don't respond to anything, even typical migraine medicines. Heavy narcotics have been used when it was so bad I went to the hospital on several occasions, but that only helped until the drugs wore off. I started to develop what I thought was a livedo rash and my neurologist was so rude to me and dismissive saying you have MS, deal with it. So I went to a rheumatologist on my own. She knows about Hughes and lupus and did a battery of tests. Confirmed that I do have livedo and my lupus anticoagulant came back strongly positive. BUT, she wouldn't consider treating me for Hughes because I haven't had an event. I told her I had severe preeclampsia when pregnant and was in the hospital but they were able to keep me pregnant til 36 weeks. The criteria is 34 weeks. I brought a bunch of research articles about Hughes mimicking MS or going along side it. She got very irritated and said if the neurologist thinks you have MS, then you do. End of story. I even consulted a hematologist who is experienced with Hughes. He wouldn't even hear of a anticoagulation trial because of lack of an event. A couple of months ago, I emailed Dr. Hughes and he replied. Extremely nice man! He said it is a huge possibility that I could have been misdiagnosed as it happens all the time with MS. I guess what I'm finding in the U.S., is that even with doctors who claim to be APS specialists (they won't call it Hughes here's), they are so adamant that it is rare and only present if the strict criteria is met. Maybe it really is MS, but my heart tells me the red flags are there and I should be persistent in finding out for sure. I don't know where to turn.

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Hi there Angie.

Did Prof Hughes make any suggestions as to how you should proceed with getting a diagnosis. If you have a positive Lupus Anticoagulant test then it should be repeated after 6 - 12 weeks and if still positive that is considered a positive diagnosis.

I my case, after I tested positive twice in the 6 week period, Prof Hughes put me on a trial of: 75mg Aspirin, no improvement of symptom; then Plavix, no improvement of symptoms; then Fragmin (low molecular Heparin injections) a huge improvement of symptoms. He then converted me to Warfarin (Coumadin), which kept me well for 7 years but I then started to get migraines again, as well as clotting incidents (bowel and hip). He put me back on Fragmin and I am now on that for life with good control of symptoms and no clotting incidents.

You need to try to find a Rheumatologist who is experienced in APS and who will put you on a trial of Fragmin, for perhaps two months, to see if you have a resolution of your symptoms.

Please have a look at our charity's website:

hughes-syndrome.org

Keep in touch and let us know how you get on but don't give up, keep pushing to be taken seriously. Hopefully others from the US will reply to you on here soon.

Best wishes.

Dave

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Thanks for the response Dave. Professor Hughes told me that I would benefit from the Hughes Syndrome website. I guess it just felt good to be acknowledged from the man who discovered the illness, rather than made to feel like a mental case. And, that I wasn't reaching for straws, Hughes could be a real possibility. The doctors just think I am trying to avoid dealing with MS. This is simply not true. As far as "MS" goes, the only MS symptom I have is fatigue and tingling. So I'm really not scared of MS.

I have insisted on retesting antibodies to 4 different doctors. None will do it that's not counting my general doctor. I want a anticoagulant trial so badly, but I don't know what else to do. It is only with this trial that I will ever know for sure. If it helped with the headaches, it will change my life. These doctors claim to be experts in APS, but that is a much different statement in the U.S.

I'm also being investigated for colitis. Is it associated with APS? I also haveicroscopic hematuria that the nephrologist and urologist can not figure out. Great guys, but they are stumped.

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As my colleague has advised, please do read Prof Hughes blogs, there is one about MS misdiagnosis.

I have had colitis and hematuria due to APS as well as two bouts of ischemic hepatitis and a clot in my right hip.

People do come from overseas to see Prof Hughes, or one of his team at the London Lupus Centre, London Bridge Hospital. You could consider doing this if funds permit.

I was originally diagnosed by a Neurologist but, generally, it seems that people find them the worst discipline for APS. The last one I saw said: APS did not exist; Prof had invented it; and forums like this should be closed down because they just enabled people to chat and invent symptoms and illnesses. I walked out of the consultation and refused to pay his fee.

Good luck and keep us informed.

Dave

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How so dreadful, have you thought about reporting this "lunatic" dr to GMC? Disrespecting the international authority IS NOT ON!!!!!

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I was seeing this particular Dr. privately and I walked out of the consultation and advised him not to send a bill as I would not be paying it. He took that on board and I heard nothing more from him.

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I am afraid that some less advanced doctors get very irritated if the patient works out something new and will continue to stand by a wrong diagnosis no matter how much of a farce it is, chip away, give them politely books, films, papers or whatever, best of luck to you. MaryF

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Unfortunately you have an uphill battle because US Doctors will only prescribe anticoagulants if you fit the criteria because of insurance issues. If they did, and you had a bleed and you didn't fit the criteria exactly they would be frightened you or your family, or your lawyers would sue. In the UK we don't have that litigious problem to deal with. many APS Specialists will treat according to symptoms and history not to a few blood tests!

You could try moral blackmail by reminding your Neurologist of his duty to "do no harm" which he is doing if he is treating you for a condition you don't have. You could threaten to sue him for misdiagnosis! Ask him, If I have MS, what harm will a 6 week course of Fragmin do me? If Im wrong I have nothing to lose! Tell him you will sign whatever waver he wants to exonerate him in case he's worried about being sued. You need to work it out with him or find someone who will do it. Neurologists unfortunately are notoriously bad at understanding our condition so be warned about that!

Read Prof Hughes May Blog on the HSF website its very relevant to your case.

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It really is a dilemma. Honestly, I think it is more ego than anything with neurologists, with mixed fear of being sued. Unfortunately, I can't just keep going to other doctors, because I have to be referred or they won't take me. Seriously, I may have to be way more aggressive. These doctors don't like confrontation or to be questioned so my guess is it won't go over well. If it were safe for me to buy warfarin out of country and self test, I would totally do it. That just seems way too risky. I love how the neuros have no problem prescribing me nasty MS melds that cost $7,000 a month for my insurance to cover, but won't try an anticoagulant. I get the feeling you had a bad experience along your journey as well :(

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I live in Houston, Texas and have been diagnosed with Aps but haven't had 2nd blood test yet but have all the symptoms and the aspirin doesn't seem to be helping me and they won't give me an anticoagulant because I don't fit the criteria because i haven't had a clot or miscarriage, I'm so sick and tired, I feel like at any moment something bad is going to happen good luck on your journey but the US doesn't want anything to do with this disease it seems, it's costing me a fortune!!!! Don't give up I haven't yet but wish I could just find one doctor who listens and understands and is willing to help.

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Hi, AngieRae,

After your two excellent answers I just want to tell you that many, many on this site (I have been here for several years) have had very bad experiences like the one you have now. So, do not give up!

I wonder if you have tried baby-Aspirin as it helped me a great deal before I had to take warfarin for good? If it is ok together with your "MS-drugs" ofcourse.

Good luck!

Best wishes to you from Kerstin in Stockholm

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Good luck! Have you consulted the APS action web site? A trip to London can be undoe I know, but. . .

One thought. Many U.S. Insurance companies offer nurses for their customers to consult with and one of those may offer a suggestion. Because: undiagnosed APS results in expensive hospital stays and diagnosis and treatment is waaaaay cheaper.

I saw one neurologist years ago. When I was bopping from ER to ER with mini strokes prior to my diagnosis - and he suggested a diagnosis of APS. But the other doctors treating me dismissed that right away. that doctor is now with Cleveland Clinic South, which is somewhere in Florida,

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I just want to commisterate with you. I have had neuro symptoms since the 80s, and have been tested on numerous occasions for MS (and even brain tumor.) When these come out negative it seems to be just assumed I'm depressed without even asking me if I'm depressed. (I wasn't, but it is hard to keep positive.) I'm going to one of the most prestigious centers for APS in the US, but they don't believe in seronegative APS. Even though I have responded to some extent to aspirin and amazingly to heperin (which I was given to prevent a blood clot when I was hospitalized after a seizure), I can't get a heperin trial after a year and a half of asking. Even from a memory center I also have gone to. I think my mother may have had what I have, and I more and more I am believing her first event was death at 69. I'm 62. It's just so discouraging that there is a possible treatment and we have every reason to want to see if it works for us, but no doctor I have yet to find in my medically advance city will let me try it.

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Hi AnnNY,

A horrible situation and frightening also and so many of us in the US have almost the same situation.

APsnotFab gave a good picture of the situation in the US yesterday or the day before yesterday.

Have you been thinking of going to England? I know a woman here in Stockholm (the only one I know that has got APS) went to London to see Prof Hughes and had at least one diagnose when she returned home.

Best wishes from Kerstin

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Ann NY.

I have had antibody tests over the years. Some were positive, some were just below "ranges". Have you looked at your titres? you must have "some" antibodies which could be "in ranges"?

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Hi Kerstin--

In a few weeks I have to go before a judge to see if I can get on disability. They give you a back payment (I hope). So then I can see if there is anywhere I can go. In the meantime, I asked my young resident doctor if there isn't any doctor who believes in seronegative APS where I am going and be willing to let me try heperin. Also, I just had heart tests and I haven't received the results from them yet, but there may be a reason to take an anticoagulant there. So, I'm going to keep trying.

Thanks so much for your support. Ann

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I too have cardiac issues..Ann NY. Good luck with the disability! Rgds,

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Thanks for the good wishes for getting disability. I just found out my date is in the beginning of October. Very scared.

Yes, I do have titers of all the antibodies, but they are considered negative. I really don't understand this line where if you are a point below you are negative, but if you hit the line you are positive, even if you are symptomatic.

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These antibodies are not absolute in minority of patients based on what have been discussed. But you still have these antibodies. You need to see an expert. I will keep all my fingers crossed for you :-) Good luck.

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Does everyone have some antibodies? I had 14 for anticardioliphin antibodies, but 14 and under is considered negative. The tests are very tricky!

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Hi sirclotsalot,

I suggest you put this question as your own post and that way you may have good answers from other members.

I wonder how your chest and bloodpressure is now and if you have got an APS-Specialist to talk to? The antibodies have nothing to do with the INR-level. Do not worry about the antibodies, they go up and down.

Kerstin in Stockholm

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HI, where in the US are you? I'm near Seattle and I have found a good doctor....

Thanks, Lisa

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I live in New York--so far away. Does he/she believe in seronegative APS without events?

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Hi there, I am studying to be a MS Nurse specialist through the International MS Nurse organization (imsno). Anyway, let me ask you some questions the MD neuro ass should have assessed to Diagnose MS.

#1. Have you had what is called an isolated clinical syndrome? Ex; lost your vision in one or both eyes? Also known as Optical neuritis?

#2. Have you ever been admitted and treated with IV steroids for an unexplained problem with walking or vision?

#3. Have you had A positive MRI lesion on the spinal cord or white and grey matter of the brain?

#4. Have you had a spinal tap also known as a lumbar puncture? Was it positive for MS proteins?

#5. Did anyone tell you that you meet the Mac Donald scale of MS criteria?

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Just to be clear, I am currently studying MS, I am not certified please check out the imsno web site. And also ask your GP MD. These are some questions you can ask. Blessings

Lyndsay

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If I'm correct, there are three test that need to be positive to confirm Hughes syndrome.

-Lupus anti coagulant (2 positives 12 weeks apart)

-Anti-B2-glycoprotein

-Anti cardiolipin

That's not to say you can't also have MS. It's not uncommon for autoimmune diseases to come in multiples. I also have Hashimoto (hypothyroidism). It was thought that I had MS at first too.

I was also put on anti depressants and sent to a psychologist before being properly diagnosed with Hughes syndrome.

Keep up the fight until you get the correct answer.

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Hi mylafont,

I do NOT think you need ALL THREE to be positive to have a diagnose. I even think one is enough but with a second test after 12 weeks also positive. I am not quite sure as I always had all three positive.

Antibodies to Kardiolipin (IgG and IgM were positive in my case)

Beta2 Glycoprotein 1 also

Lupus Anticoagulant was not tested at first. Positive also when they tested for it.

There are not very common to have all three positive.

Kerstin

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Some websites in the US on APS info say they test for all three. I was already being tested for two of them by my rheumatologist. When I finally got on to see a neurologist, she put me on aspirin, suspected it was APS and did the last test and confirmed it.

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This mostly was based on lesions one neurologist seeing lesions and issues with the vascular system in my brain.

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I think I know where you are coming from, mylafont. I just looked at "how APS is diagnosed" and yes, it looks very complicated. Diagnostic process shouldn't be solely dependent on antibodies. Drs shouldn't be a laboratory technician. If they act like one, there's something is not right.

Neurology is generally a wrong discipline for diagnosing central nervous system autoimmune conditions. Some people actually died due to the useless Neurology departments, saying, you don't have anything serious, go away and rest and unlucky people died. They seem to think their MRI will show anything serious, it does NOT. They always sound as if your condition isn't serious if their precious MRI did not show anything. They are slow in admitting that their MRI is only "a shadow of the brain" and not the brain itself!!!

Not everyone has MS-like spots on MRI. Some People simply don't make high enough antibodies (genetic) yet have the whole gamut of clinical symptoms. Antibodies are used as a guide not as an absolute in Rheumatology. Antibodies go up and down in most people anyway. It's true that if you have high titres of these antibodies, it's much easier to get a diagnosis but experts can diagnose people without these skyrocketing antibodies (probably, in an acute stage). Neurology cannot begin to understand the whole concept of APS except a few enlightened neuros. They are probably very slow to change. Am I right that in Japan, they use proteome analysis and they have actually found the antibodies for APS? It seems that Japanese research have this drive to offer a far more accurate test for APS patients, who are otherwise left undiagnosed?

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Hi mylafont,

They can choose I guess to test for all three, but to have a diagnose I think (I am not sure) it will be enough to have one positive and do a second test after 12 weeks.

Kerstin

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I'm only going by what the doc that diagnosed me discussed with me. I don't know what is "officially" needed or used.

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My MRIs were also helpful with my diagnosis.

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I was 1st Diagnosed with RRMS by 2 neuro MD's then had to see a MS specialist at a MS clinic, And was told that I do not have MS. I suggest you get as many second opinion's you can. The reason I was tested for APS in the first place was because at age 29 I had my first stroke.

No one could believe I had a stroke.

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Hi Lyndsaylou,

Did you test positive for APS? Do you have APS-symptoms?

Kerstin

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Yes I have APS

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Anti beta2 glycoprotein This is a must to be APS positive

and Anti cardiolipin

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Lindsaylou--

Please read this from the Hughes Charity Website:

hughes-syndrome.org/about-h...

You can also just Google seronegative APS MS. The people who are studying this are finding other antibodies that can cause APS and be treated with anticoagulation. Dr. Hughes, if I am reading his blogs correctly, often sees people with the symptoms of APS who are seronegative and puts them on a heperin trial. People with APS will respond quickly to heperin, whether or not they have antibodies.

When I had a seizure and MS and cerebritis were possible diagnoses, I was given heperin to prevent blood clots and that was the only thing (pretty much) I was given while they did 10 day of an EEG on me. After a several week long illness while I lost my memory and had trouble speaking and other neuro symptoms, I seem to be returned to normal. I got worse after the heperin was stopped, but not as bad as I had been.

I spent 7 months after I left the hospital wondering how that was possible. Finally, I went to my previous GP who found I had antimylen IGG antibodies and I started researching and came across Hughes syndrome, and that seemed to explained so much. I have titers of all the APS antibodies, but they are considered to be negative by the laboratories. I have been trying to get a heperin trial in the US, to see if anticoagulation would help my symptoms. But the in the US, they believe you must have these three specific antibodies. Even though they are finding more cases here (US) where even psychosis has been reversed by anticoagulation, although the sufferers didn't have any of the antibodies that are usually looked for. Thus, people like AngiRae and myself have MS symptoms, but can't find help.

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