Supplements

[L0sted]

Hi everyone I am new to this forum.I have not been yet diagnosed but there is suspicion with aps.My symptoms are vertigo(its like sinking when walk).Everything started one year ago when i had a constant migraine,then i was on MRI scanner which showed brain lesions(doctors said its small amount of changes).Up to the present im using apirin one tablet daily.Because here there is no APS specailist and no one to say me is there any suppliments/vitamins or anything else which could help.Sorry for my english i was using google translate and thank you in advance for answer.

[Lure2]

Hi and welcome to this friendly site!

From which country are you? I understand very well what you write.

Has the Aspirin helped in any way with your symptoms?

Best wishes from Kerstin in Stockholm

[L0sted in reply to Lure2]

I don't think so vertigo is almost always present when walking.

p.s Im from Boznia and Herzegovina

[Manofmendip]

Hello and welcome.

Thank you for answering my colleague, Kerstin.

You really do need to have the blood tests carried out that are listed on hughes-syndrome.org and then, depending on the results, find an APS consultant whom you can see.

Keep in touch with us.

Best wishes.

Dave

[Lure2]

I do agree with my collegue Dave what he has said!

Sometimes we do not have the antibodies there are for APS ( from a blood-test) but if it is a doctor that understands what you tell him about your symptoms (usually an APS-doctor) he can all the same know if you have the symptoms suspected for having APS and give you the right diagnose. That is very important because there are so few doctors that understand this illness.

We feel a lot better when we are enough (and correct ) anticoagulated as we have very thick blood.

The main thing when we have APS is an anticoagulationdrug. This illness can effect a lot of organs if not treated correctly so it is important not to wait for that Specilist too long if you have symptoms.

Look also at apsaction.org .... (doctors from different countries)

Books also available on Hughes Syndrome Foundation Charity website. I prefer: "Sticky Blood Explained" by Kay Thackray. Very god to understand this illness.

Stay on here because there are several members from different countries here that can perhaps help you also.Please let us here how it goes for you!

Best wishes from Kerstin in Stockholm

[L0sted]

Thank you for answer.My rheumatologist said that i use aspirin for now,because my blood tests are at the border positive to negative,igG and igG beta 2 are now negative which has been positive 2013...29th january i have appointment at doctor.Again sorry for my english

[MaryF Administrator]

Hi there first of all welcome to our friendly and informative forum. Here is a medical paper, you need to look at some of the names at the top, some of the medical staff may be in your region or country, you can try making contact for advice. ncbi.nlm.nih.gov/pmc/articl...

ALSO please see paper below, convention held and useful names on here, including from Boznia: listserv.rediris.es/cgi-bin...

MaryF

[Lure2]

Thank you for your answer.

I wish you good luck at the 29th of January!! Please follow the advise from MaryF as she knows this illness very well and knows how to act in different difficult situations. She has found some papers that you can use.

Kerstin

[L0sted]

Thank you for answer.Ill see what hes gonna say 29th.Just one question more,i had give my blood 8 times that provides me free medical care.I need to give it 2 more times to have free for life.Is it safe with suspicioun on this desese?tnx

[jetjetjet]

Be careful donating blood !!

[L0sted in reply to jetjetjet]

Just must do that even at the cost of life,I can't pay 50e for mri and + other blood tests every year.Wanted to know have you ever had any symtoms before diagnose?I had nothing not a single headache,just one day in 2013 changed my life not a same person any more.Now im 24 years old.

[jetjetjet]

I had a odd feeling back pain that ended up as clots in both lungs.then dc's went on to find clots in left side groin and behind left knee. so YES.

Can't say i agree with the loss of life !!

[L0sted]

Donated blood this morning and no changes at all

[Lure2 in reply to L0sted]

What do you mean with "no changes at all"?

Read at least as much as you can about APS. We have too thick blood! We need anticoagulation when we have APS .When we get our anticoagulation drug we feel much much better and we are not in danger of clots.

If you had positive antibodies in your blood last year it can be negative this year. Some of us are always negative to the Cardiolipin and Beta2Glycoprotein and Lupus Anticoagulant antibodies. Still we have this illness APS.

When we see an APS-specialist he knows this illness so well so you only have to tell him your symptoms and he can tell if you may have APS (Hughes Syndrome or Sticky Blood) There are so very few doctors who know this illness which has only be known for 25 - 30 years.

Take care.

Kerstin