Confused with Diagnosis

[Catnip1012]

Hi I am new here and need some input here..i have tested positive twice in 20 years for sms which was low titre...through the years have had neg ANA'S..a few months backI asked my family dr tocheck for lupus anticoagulant..he agreed and all numbers were elevated, one med to high positive.. went to vascular surgeon and he sent me to rheumy..rheumy wasn't concerned said I would have had to had blood clots to be diagnosed with APLS, I have had which I told him years ago me and my neuro was not sure what I was experiencing were TIA''s which I believe were. MRI showed white matter and suggestive of small vessel disease..he seemed to have blown it off..what is anyone's intake on this r heumy I seen..thsnks concerned..

[lupus-support1 Administrator]

I would find another rheumatologist who knows something about the antiphospholipid antibody (Hughes) syndrome. Or, a haemotologist who also specialises in APS.

Blood tests can and do change and therefore taking a clinical history is very important. It is clear you are worried and therefore ask your GP for a referral to see a specialist.

I believe there is a UK list in the Pinned Posts.

With good wishes,

Ros

[Lure2]

Hi Catnip,

I am confused now. I have answered Kelly in Texas and that answer would be much better for you.

Please read my answer to her question "Optic Nerve Neuropathy...." from today.

I am going to bed here in Stockholm. Perhaps I was in a hurry or I am a bit tired.

Sorry for the confusion.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

Hi Catnip,

I have now heard that the post was removed and with that post my answer to you

So now I do not have to be confused about what happened.

I agree with all the others here that you need a Doctor who has had patients with our blood-disorder and who understands that our titres and antibodies can go up and down in periods but that we always have the disease. If he does not know this illness well he will not be able to give you the right treatment either. We often use Warfarin with a higher level of at least 3.5 - 4.0. Warfarin has been my "life-saver".

You also need anticoagulation for your eye-issues. Please read "Sticky Blood Explained" by Kay Thackray. She has like me, a lot of neurological symptoms and describes some of the eye/balance-issues with HS/APS. A good book that explains this illness and also good for relatives to understand how it is to live with this rare illness. Many members have read and liked that book here.

It is a fight and sometimes a trial and error to have this illness. A fight to get to the right Doctor and trial and error with the drugs.

Prof Hughes, who is the Doctor who found this illness in 1983, always talk of "the big three", which are Sjögrens, HS/APS and Thyroidea. They are very often linked together (like "cousins") and often mixed up by ignorrant and uneducated Doctor who have no experience with them. We have also found that the Neurologists do not "get" what this illness is about - too sticky and thick blood that has to be thinned.

Now I say GOOD LUCK to you!

Best wishes from Kerstin in Stockholm

[KellyInTexas Administrator in reply to Lure2]

Yes, sorry Kersten, I forgot that my full name was typed on those test results! APSnotFab very nicely reminded me . She didn't have the originals so it wasn't easy for her to simply take my name off. I deleted them- I need to hide my full name to be in compliance with health unlocked forum regulations.

I'll repost those because it's so important to learn about.

[Manofmendip]

Hello and welcome.

You need a referral to a Consultant who is experienced and knowledgeable in APS/Hughes Syndrome.

Where are you from? Knowing this will help us and other members to help you by recommending consultants near to you.

Dave

[Catnip51 in reply to Manofmendip]

NJ but Phil's Pa is only 30 min away

[KellyInTexas Administrator in reply to Catnip51]

I did answer your other inquiry- I answered Rutgers in New Brunswick. I see Dr . Thomas Blom in Plainsboro for my specific heme when I'm in new Jeresey. He's very good. I think Rutgers might be better than Philky. They have an entire prothrombotic disorders department.

Dr Claire Philipps MD.

I gave you all the exact info on your other post question.

[KellyInTexas Administrator in reply to KellyInTexas]

Catnip- I went sero neg/ sero pos...

he gets it totally. I clotted terribly. Several pregnancy losses. I'm loosing my vision. Several DVT's.

I see dr Hughes in London stating all this/ dr Blom has my clinic letter from Hughes.

Really, don't go to NYC. I've done it. Go to Blom. He can get you to Rutgers if need be. You can pm me if you need.

I have an INR of 3.5-4.0

He doesn't bat an eye. He understands it needs to be this high. Do you understand how RARE it is to find a US doctor who is willing to do this? Even if it climbs to 5, he doesn't panic. " just east a few more greens and adjust Coumadin 1 mg down for one night only and watch it...)

I take 17 mg of Coumadin a day. No problem. He doesn't get worked up- he knows it's not about the number- but rather it's a reflection of how severe the disease process is.

He's experienced. Seasoned. Balanced. He asks the right questions.

And... no one is perfect. But he's reasonable.

[Wittycjt in reply to KellyInTexas]

This is a great response, Kelly and Catnip: Kelly is correct it is very difficult, extremely difficulty to find someone in the US in the know. Heed her suggestion and make an appointment. If need be you can always cancel later. If she has tried this person and has found success than half your battle is done. I use a hematologist that I am very happy with but you sound as if you have more issues than me possibly and mine may not be as well versed. Best wishes, Cindy in NJ

[KellyInTexas Administrator in reply to KellyInTexas]

Catnip, in re reading this I see that I may be replying to "specialist" incorrectly. I apologize. If you have not actually clotted, you may be correct in asking for a Rheumatologist. But honestly it may be quicker and safer to get to a hematologist first. Dr Blom will run the " additional antibodies" also. Not all hematologists run those, just the really good ones- and only the really good rheums. They are the phospotydlesterilines, ( I think I've spelled that slightly wrong) often part of the Elisa tests.

[MaryF Administrator]

Hi, if in the UK, on the right hand side of this forum, under pinned posts, we have a list of Hughes Syndrome/APS Specialists. It is necessary to see a consultant who has knowledge of he whole disease not half baked theories, which dismiss your blood tests and medical history. If not in the UK, we can still endeavour with the knowledge of other members to help you. MaryF