New here - have been searching for health problems 3plus years - thought MS - just tested positive for lupus anticoagulant.

[cmars]

Will go back to my doc in three months for recheck. Meantime, told to take lo dose aspirin. Calls in to neuro to see if my brain lesions, sx are related to this. Wonder about waiting three months to discuss this with doc? My exercise is getting harder!!! (has been for a few months now ). Strength training with trainer. Should I push seeing doc sooner, or wait it out? Thank you in advance.

[Manofmendip]

Hi cmars.

Where are you from?

Three months is a long tome to wait, maybe pushe to be tested again after 6 weeks. if still positive, ask to be put on a trial of Low Molecular Weight Heparin, at a dose suitable for your body weight. I would say a two month trial and, if you feel much better, push to be put on it permanently. Maybe coupled with 75mg Aspirin too.

Good luck and keep in touch.

Best wishes.

Dave

[cmars in reply to Manofmendip]

Thanks Dave. I am from Manlius NY - outside of Syracuse - east coast.

Your suggestions are kind of what I was thinking from my research. My primary care physician doesn't know about this disease, and wants me to see a hematologist. I have calls into my neuro so he can set me up - but he isn't returning my call - and I haven't been able to even discuss these results with him. My neuro is at a large university teaching hospital - very good - this is all so confusing to me - I don't even know who I should be talking to as far as Docs. Who is the main doc to treat? The rhuematologist did my latest testing, but hasn't been seeing me on a regular basis -

Just trying to make sense of all of this!

Thanks again.

Carol

[Hidden in reply to Manofmendip]

In the USA they, at least my former doctor required 12 weeks; 3 months. I've read 6 weeks, 8 weeks, 12 weeks.

d

[MaryF Administrator]

Hi there, sometimes ringing up and persisting in asking for a cancellation slot, having secured the email address of the secretary can move mountains at times. Do take the aspirin, but I would push for a quicker review. Mary F x

[cmars]

Thanks Mary, and as you can see from my above response to Dave, I am having a hard time connecting with docs. I will keep at it. I know from my past three years plus, that patience is a virtue in this game.

Take care.

Carol

[Manofmendip]

Hi Carol.

Patience is a virtue but, as Mary says, you have to fight your cause and persist in this disease too.

Neurologists are the hardest animal to crack, they seem to think the disease doesn't exist, that those of us 'so called' diagnosed with it are mad and forums like this just allow us all to dream up new symptoms; an actual quote to me by one neuro.

take care and keep at it.

Dave xx

[cmars]

OH boy....thanks all....Sounds like I'm in for a bumpy ride. Will stay in touch.

[GinaD]

I would try to get in to see a hematologist, if that door can be jammed open at all. They are most likely to know what Hughes is and the varying ways to treat it.

Let us know how it goes, and when it goes.

Gina

[cmars in reply to GinaD]

Thank you Gina. I placed another call to my neuro - the secretary flaged it as "urgent" this time around (third call ). I'm looking to him to get me in to see a hematologist. . I like my neuro a lot - he's young and current, and very smart, and doing some amazing research - but just too darn busy.! Will keep you posted.

[Hidden]

Hi cmars,

I am from Sweden so I do not know what docotor you should see in England, but I have APS and are on warfarin and have read this site for almost a year and i know that the people above are very good and know what they are talking about.

So good luck in your future search!

Kerstin

[cmars in reply to Hidden]

Thanks for your response Kerstin. I'm in USA - NY. Thank you for sharing your confidence in this site, and the people on it. I am appreciating all the input as I gather as much info as I can.

Sorry you have APS and I hope you are doing well. I am so curious about so many things re this syndrome - but one step at a time. Kind of hoping the second test will come back negative, but then that leaves me still now knowing what's going on with my body.

Take care.

Carol

[cmars]

Well my neuro called ....he is in agreement with my primary care doc, and gave me the name of a hematologist who knows a lot about this, treats patients for it - so that is good news. So now all I have to do is have my primary care doc make the referral and go from there. Thanks again everyone for all the information you shared - taking the time. I hope you are all well and I will be in touch again when I have more to share. I think we learn so much from one another.

CArol

[CaliforniaGail in reply to cmars]

I am in California, treated by a rheumatologist. My APS is diagnosed with anticardiolipin antibodies, not the lupus anticoagulant, but I have some mild lupus symptoms and panniculitis, Reynaud's, along with my "UCTD" Undifferentiated Connective Tissue Disease. I mention this since most of us have overlapping autoimmune symptoms, so stay on top of all your body issues (doing a journal is very helpful)-- you might have some good days, then some with strange aches and pains that will cause you to inquire with this great group of very informative people whose body of knowledge from experience greatly complements any doctor's education. I went months feeling good, then whammy, something new hits. Our bodies change, so you might have other issues rise, and may require a different kind of specialist at that time.

Right now it is important to be aware of the dangers of having the anticoagulant in your blood -- most of us didn't know it until we had a major clotting incident. So don't miss your aspirin and know the dangers of sitting for prolonged times and flying in planes. If you have a desk job, set a timer to get up and walk around every hour. Once a clot occurs, your doctor would no doubt put you on warfarin for life, the typical treatment. But if certain symptoms bother you, you might try other blood thinning meds that will also give you some protection from getting a clot. If I had not had major PEs in lungs, I would have opted for just taking aspirin and treated any joint aches & pains with Pacquenil. Aspirin works well for blood thinning, but as soon as a clot occurs, the American protocol says warfarin. Life goes on fine for me, but taking it is a pain in the tush!

[cmars in reply to CaliforniaGail]

Thank you for your reply .

I am hopeful the hematologist will see me. He wants to see my blood work first, before he will make the appt. My rheumatologist is faxing hat to him today.

I have been searching for answers to my health issues for over three years now, which I know isn't long for some. I try and stay on top of all the issues, testing, docs etc but sometimes I think all THAT makes me sick. I am fortunate to have found a great neuro who listens, and is seeing me every six months with follow up MRI - even though he isn't sure what this is...possible MS - or something else autoimmune in nature - but whatever it is, he is willing to keep watching, testing, waiting....until it shows itself.

I know how important it is to be our own advocates - and be persistent. Sometimes it makes you crazy! If all my sx would go away, I would not be as persistent. But the daily weird things that continue to happen keep reminding me that something ain't right.

Thanks again, and I hope you are feeling well.

CArol

[MaryF Administrator in reply to cmars]

It is not uncommon for neurologists to diagnose MS as some features look the same.. and behave in similar manner and scans can look similar, of course some people do turn out to occasionally have both, but your neurologist may find this of interest. This is a very good article and MS is mentioned in here: ww.hughes-syndrome.org/resources/pdfs/Clinical-Services-Journal-Feb-2010-pp27-31.pdf

Mary F x

[cmars in reply to MaryF]

thanks so much....so good to be informed.

Carol

[Jillymo]

Hi Aps hope your ok after your plyt the other day. Can you tell me how i can get info to take to my Consultant & Gp ?

I do not have a printer, I know i have Sjogrens & strongly suspect Hughs or Lupus.

If I get in touch on the help lines do you think they will send out some info ?

Jillymo X