Holy cow! I just looked it up! I hoe it turns out to be a misdiagnosis!
Mary Ann

Well, I've been wondering myself if I have Hughes syndrome or anti-phospholipid syndrome. I have a flare where I had a whole bunch of bizarre neuro symptoms, couldn't figure out how to use my computer when I usually fix other peoples computers, and couldn't remember anything from one moment to the other. I has a seizure in the ER and ended up with a head full of wires for 12 days. They gave me heperin and suddenly I was have normal conversations and seemed to be remembering things and my brain waves went back to normal. I just got the currrent list of blood tests for APS and asked my PCP to do them--they should have taken them in the hospital, but they didn't. I've been taking aspirin and that seems to be doing me some good. There's a really good website on it:

http://www.hughes-syndrome.org/

According to wikipedia, they don't think sneddons is the same thing as APS anymore. But you might find some good info on the website, and your neurologist might really be thinking of APS.

At Mary Anne - I know! My psychiatrist suggested it as well, so hopefully both doctor's are wrong.

Ann - Thanks for the information! I will check it out.

I was in the ER about 1 year ago when my right arm went completely numb and cold. My neuro now thinks that might have been a TIA or mini-stroke because I think they don't always show up on CAT scans.

I don't think APS is quite as scary as Sneeddons syndrome, since treatment is effective. I had my leg go completely numb many years ago before they knew that much about it. For me APS would explain a lot of these strange neuro symptoms I've had, but I'm waiting for the new tests.

Okay, Gab, I googled this, too, and I have to say, modern medicine just keeps astonishing me.

My sincere apologies if this post seems insensitive, brazenly stupid, arrogant, or reckless. But this barely sounds like a distinct clinical entity. I mean, there's no test for it. It sounds even more vague than MCTD, at least there are markers for MCTD.

What is the POINT of this diagnosis? How does it inform treatment planning? It seems like the only treatment is aspirin, warfarin, or plaquenil. If they want to put you on those, fine-- but why label someone with this? How does that improve your outcome? Why would someone want to put that on your chart?

What purpose would that serve, other than justifying a lot of invasive medical tests, and making the patient and their doctors completely freak out for the next 40 years because you might be at greater risk for cognitive decline?

You know my feelings about brain scans: I'm never having one, unless I have an aneurysm or something that might be responsive to surgery. If that's the case, sure-- there's a good reason for doing it. But if it's extremely unlikely to detect anything fixable, absolutely don't do it.

I'm sure if I had one, it would show all kinds of terrible crap... probably white matter lesions, progressive multifocal encephalopathy (okay, I don't know exactly what that is, probably because I have it.) They'd probably take away my sports car, body board, and AK47 (kidding!) and tell me take up bird watching... and then I couldn't stop people from jumping off buildings, which is, as you know, my favorite hobby at this point.

My brief literature review: The only reason you want to know if you have this or not is whether or not you start on warfarin. If that's the clinical dilemma, here's the test I'd demand:

"Legierse et al. (2008) noted the difficulty of defining the diagnostic criteria of Sneddon syndrome and stated that although there is no gold standard for the diagnosis of this disorder, skin biopsy should be performed."

Don't let the neurologists get you down. They're all crackpots... almost as bad as economists.

I'm a crackpot, but at least I KNOW I'm a crackpot.

Thanks for listening, hope I have not given any offense, and I really mean that. I'm flipping the "rant" switch to "off" now!

I take no offense at all and appreciate your comments! I had an appointment with my cardiologist today because my blood pressure is up. I informed her that I was diagnosed with sleep apnea and that I started a CPAP 1 month ago and that I have REM Sleep Behavior Disorder. She said the fact that I get no useful sleep could cause the cognitive difficulties, not Sneddon's Syndrome.

She said that is why they use sleep deprivation as torture! She seemed dismissive of the potential diagnosis.

Thanks all,

Gab

FYI - A friend told me yesterday after the potential diagnosis of Sneddon's Syndrome to just stop seeing doctors.

I got a kick out of that, because they are ALWAYS testing me for something and they all insist on seeing me every 6 months or more!

Gab

$2500 for the neuropsychological testing! They don't take insurance. I don't think I am going to do it. If I get dementia, I get dementia. If I have a stroke, I'll learn to manage - just like we all do!

Gab

Gabarielle,

Stay strong! You've got the right attitude.

Way to go! And very useful post. Interesting about the blood pressure.

My blood pressure spikes crazy high, and I also cannot sleep, though it's not the sleep apnea, we're not sure what's causing it. And while my executive function seems... okay, at least, my affect regulation is still way off.

There are different things going on with each of us, but the sleep is such an important part of this. When I get really sad is usually first thing in the morning, before I am awake, and in the late afternoon, when I start to get tired, and that's when my blood pressure is worst.

There was this wonderful gay nutritionist who used to work at the health food store in Burbank, and I remember him telling me, "Honey, if you don't get enough sleep, your blood pressure will get really high-- but no doctor will ever tell you that."

Since I started investigating Hughes Syndrome, I've concluded that there is confusion about this among doctors. My PCP thought the test was the VDRL, which has always been negative. There may be confusion about what is Sneddons and what is Hughes. (It would seem more likely that someone with MCTD would have Hughes.)
At any rate, these are the tests the Hughes Foundation says are diagnostic:
There are three main blood tests used to diagnose .

Anticardiolipin antibodies (aCL)
Lupus anticoagulant (LA)
Anti-beta2-glycoprotein-1 (anti-B2GP1)

Any one of these can mean you have it.

I had a lot of neuro symptoms originally, including some cognative problems. When I took plaquinil, they almost completely disappeared.

One thing that people with MS have been taking which I started to take was low dose naltrexone (for fibromyalgia). It really seemed to help with my neuro cognative symptoms. Then I started taking one aspirin a day which seemed to improve my cognative symptoms more. Recently I started plaquinil again, so I am hoping that will again bring my mental clarity back.

I wouldn't take a $2,000 test that insurance doesn't pay for, but I'm doing whatever I can to get better. From experience, and from what I understand from information on the Hughes Foundation website, this can be reversed. It's not alzheimers, which doesn't get better. But it needs to be attended to. So my suggestion is to see a rheumy or neurologist who is up on this.

Thanks for all of the advice and suggestions!

Gabrielle