[LizaJane]

I have two abnormal blood tests which point to this diagnosis. This is not something I've ever known about or thought about. In looking it up quickly on the net, it seems to be a clotting disorder.

Anybody know whether this causes neuropathy? I don't see it on the washington U site, and it's hard to believe I could have another diagnosis, disconnected from my symptoms. Rather like an incidental finding.

Yipes.

[Aussie99]

Multiple sclerosis-like features
--------------------------------------------------------------------------------
Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”.

When I first went to my first neuro he asked me if I was having miscarriages. I thought what on Earth does this have to do with my neuropathy? Apparently it's called Hughes syndrome or sticky blood, or antiphospholipid syndrome, and it has alot of neurologic manifestations.

[dahlek]

But I just 'webbed' it up and found this: http://www.apsfa.org/aps.htm

I think, maybe some of those w/Sojrens's mite be able to endorse or whatever this particular site...

At least, I think/believe? The coagulant issue was crossed off MY list...I do not know the particulars about your issues...Good luck researching?

I suspect, but then, I am one mere mortal? That it may be a condition that is usually misdiagnosed or that the symptoms are mis-interpreted... One more added to the sad but, true categories...

I DO truly hope that you find out either the yeas or neighs and soon tho! - j

[mrsD]

But I thought this was connected to Lupus.

I would worry about it tho... on the old OBT board someone on the Lupus forum had it. It is a risk for stroke, or multi-infarcts, as well.

Don't quote me but I seem to recall the person finally went on Cytoxan...a very dramatic and dangerous therapy.

If you Google "sticky blood stroke" all the awful things are there.

I'd consider it far more important than PN.

[Silverlady]

Could it all be connected to an autoimmune problem?

Look about half way down the page in this one: http://www.mic.ki.se/Diseases/C20.html#C20.111.197

And here is one I found: http://www.neuroland.com/cvd/aps.htm
And down the page to other symptoms: http://www.emedicine.com/med/topic2136.htm

My thinking is that this is related to autoimmune problems.
Billye

[fanfaire]

I have a friend with anti-phospholipid syndrome. Unfortunately, she had a stroke before she was diagnosed with it. She now takes blood thinners to avoid another occurrence of stroke.

This syndrome occurs frequently in connection with Sjogren's syndrome, lupus and RA. One of my old rheumatologists tested for it with all his new patients that had an autoimmune disease, just to be thorough.

I do not know if there is a direct connection between anti-phospholipid syndrome and peripheral neuropathy.

I hope you can get some answers. While people with autoimmune diseases often have more than one at the same time, it is also entirely possible to have one exist in isolation. It is also possible that you didn't have this before and now you do.

fanfaire

[Yorkiemom]

If you don't mind me asking which tests were suggestive of this, LizaJane?

Cathie

[glenntaj]

--take a look at these two sites (one's an overview, the other a newsletter with much more personal info/stories):

http://www.apsfa.org/aps.htm

http://www.apsfa.org/docs/APSFAVol6Summer2007.pdf

[LizaJane]

Thank you, all of you, who did the research that I just lost the energy to do. I feel like I've just had a biopsy and am waiting for the results. I've gone through all the links. And Scarlett, here's the test that was abnormal.

Here's what was abnormal:
test........ range......... me
PTT-LA <40...... 84
DRVVT <42....... 53

Do you know if this is within the range of positives that sometimes come up on people? The Quest Lab site says that these get elevated frequently, and should be repeated in 6 - 12 weeks, if abnormal. I told the rheumie that on Friday, and he looked at me with a worried look, and said, oh, that doesn't refer to numbers this high.

But my great docs have been wrong before, and in their own field. My endo was worried I had a pituitary tumor; he told me it was impossible to get this much pituitary failure from a few days of steroids in June. But that does seem to be what happened.

I don't think I have a lot of the symptoms that this seems to cause. It doesn't cause peripheral neuropathy, although it does cause MS like syndromes. And that's my major symptoms. I do have the abnormal MRI that goes with this picture, and I have had visual problems over the years, but when I've had them, I've gone to opthalmologists, and they've never suspected clots.

So, I'm just hoping this is not true. I don't know how I'd take the news.
I've been content living with something nameless, just thinking I have some "vague" autoimmune problems and idiopathic neuropathy. I really dont' want anything with a name. Anyone who has read my posts over the last few weeks may have read that my neurologist argued against finding out if the name Sjogren's fit me. He said getting a "name" like that would only make me sad. And now, here I am, waiting to see if I have another "named" illness, and I see his point.

I've been feeling generally stronger as my pooped-out pituitary seems to be getting back online. But I'd stopped my estrogen replacement this past summer when I got the abnormal MRI, thinking that if it hadn't helped my spine heal, what was the point? I'd never had hot flashes. My OB had put me on it years ago, before the research, and after the spine surgery, the docs thought I should stay on it, to help my bone heal. But when that didn't seem to work, and my mri showed spots, I figured it was time to go off.

NO. I've been having hot flashes nightly since then, and can't fall asleep for them, and wake up with them. So I asked my endo about re-starting, and ahe said yes, but then, not knowing I was cooking a diagnosis that might pre-dispose to stroke. So, I've been on them for 3 days, and they haven't worked yet, but I figure I'll keep with it until I hear about the diagnosis, and if I have to go off, will do it then.

Though I do not know how women survive with these. How can you get up and go to work when you've been up all night hot flashing?

Oh, and I'm bothered a LOT by the itching/supersensitivity/ weirdness feeling in my fingertips on my left hand. The pin pricky stuff I've been getting is new. I've got lidocaine patches wrapped around my fingertips, but it's not helping. Anyone have suggestions for this really annoying symptom?

Last, my bone metabolism doctor is running a factory, and it's impossible to get a hold of anyone there. I've called and faxed about whether they are concerned about my calcium and heard nothing back. Anybody have any idea whether a calcium of 10.7-11.0 could be causing my worsened neuro symptoms?

Last thing that's off: My cholesterol has JUMPED to 350 from it's usual 225 - 250. I'm putting this in this note, just to help me log this all. Nobody wants to treat it; nobody knows why the big change.

The only new medicine is two months of Forteo. (Oh, Mrs D, I'm sure you know that Calcium goes up with Forteo---the 10.7 is a "trough" number, 15 hours after a dose. The 11.0 is a guess, that that's what it might be, say, 2 hours after a dose.

There's too much happening for any one person to keep track of.

Also, my sinuses are "on the edge". At any moment they could cross the bar from near infected to infected. Well, I know they're infected; just a question of how much and can my body lick it on its own.

It feels like too much to keep track of.

I left the house today having put the house cordless phone in my purse, leaving my cell phone at home, and dropping my housekeys in the rosebush that I tended briefly on my way out the door. I got into the car, couldn't find my keys, and figured this was a sign that I needed to spend the day indoors. My neighbor let me in, and helped search for the keys with me; he figured out they had to be in the rosebush, thank goodness.

So yes, I spent the day at home.

[mrsD]

I am sorry to say this complexity is moving way beyond any of us here on this board, for understanding the medical aspects etc.

The only thought I can share now, is that it is good you went off the estrogen, since that leads to multi-infarcts on its own. Combined with sticky blood, not a good thing.

Also if your pituitary does not spring back, I would wonder if you had a mini-stroke there already. Adenoma is possible, but usually adenomas begin secreting some hormone in EXCESS... and you don't seem to have that.
Some create low hormone status, some secrete extra hormones. It is really very variable and hard to predict.

Sorry you have to go thru this.
You can vent here however, and the support is still here, but asking medical questions is getting into the beyond realm, IMO.