Symptoms !!!!!!

[jeanietrawick]

Was wondering what your symptoms are ? just wanna see if anyone has some of the same symtoms as me and if anyone has had strokes due to this diease ?

[MaryF Administrator]

Hi and welcome, please have a look at our charity website: hughes-syndrome.org/ Also this site contains the list of symptoms: hughes-syndrome.org/about-h... Many on here have had strokes and TIA's and miscarriages and a host of other symptoms. It is easy to get the blood tests done if you have not been tested so far. MaryF

[jeanietrawick in reply to MaryF]

Thank you , and I have been tested and tested positive . I found out 2 yrs ago when I had 2 strokes . but , I get weird symptoms like with my vision it gets all blurry like I cant see anything in front of me , and my arms and legs go numb or tingle and even the end of my tongue will tingle sometimes . has anyone else had this ?

[MaryF Administrator in reply to jeanietrawick]

Yes, and you need the right Hughes Syndrome/APS expert to help you make sure that your medication is at the correct level for you, or indeed the right type. I am sure many on here will answer you further. MaryF

[Manofmendip in reply to jeanietrawick]

Hi Jean and welcome.

I agree with what my colleague, Mary, has said.

I have had similar symptoms to those you describe and they can be a type of migraine but also TIAs gave me them too.

Who is managing your APS and what medication are you on?

Dave

[jeanietrawick]

I just had my inr checked and it was good , and I am on 13mg of Coumadin which is quite a bit ! I just don't understand it , but the symptoms drive me crazy :}

[MaryF Administrator in reply to jeanietrawick]

With any autoimmune disease and this one needs an eye kept on it, you need to really check out your B12, your iron and your Vitamin D levels, they need to be kept at the right levels. B12 deficiency can frequently be missed and can cause similar symptoms to what you describe. Also keep an eye on your Thyroid. MaryF

[Andrewl]

Hi Jean, and welcome to a friendly and honest site. We all have APS, and all have varying symptoms. Indeed, I have had tia's, and get tingling limbs. However, the list of related symptoms can be endless, and we all have a different story. If you feel something, and not sure, this is the place to find out. I also agree with Mary and Dave; it is very important to have your blood managed with right medication. We are always here for each other, and no matter what time of day, someone will listen.

Andrew

[jeanietrawick]

Thank you Andrewl , I am so glad I found this site .

[Lure2]

I also agree with the others and I have had those symptoms you describe. I am also on warfarin. It takes a couple of months to find the right level. I feel best at an INR of around 3.5.

Stay on here as you are among friends from different countries who all have this rare illness that so very few doctors know.

Best wishes to you from Kerstin in Stockholm

[jeanietrawick]

Thank you so much Lure2

[tim47]

I agree with my colleagues, you need the right target INR set by your people. I have had a stroke and TIAs, the last when my INR was 3.3. The amount of Coumadin (Warfarin for us Brits), as compared to another with APS, is not a guide to your right level of coagulation. Far too many factors can influence. I have a target of 3.8 to 4.0 and acheive it with around 4 to 5 mg a day, and I'm a big chap.

You must get the right advice from your medics or, preferably a specialist

[Lure2]

I agree with Tim47.

I take 2 tablets a day, that makes 5 mg/day. I selftest like Tim also does. I have an INR today of 3.3.

The most important thing is to have a doctor who understands that we are not like the other patients that are taking warfarin. We have sticky blood.

We can be more sensible on a lot of other factors. New drugs, antibiotica, viruses etc. Try to be have a CONSTANT intake of food. Make notes as you otherwise will forget if you make any changes. Broccoli and brusselsprouts will change your INR but it is good to eat some K-vit rich vegetables all the same. But then you must really be consistent with that and do it every day. K-vit rich vegetables can lower your INR in perhaps 15 hours (does so for me). If you change your tablet intake it can take 2 - 3 Days- So when you doctor tells you to lower your dose or to take more tablets it will take a couple of days before the INR will follow.

Remember we can all react different. Good Luck. Stay on here and come back if needed!

Kerstin

[Andrewl]

I agree with Tim. I have been on warfarin for 12 years nearly, target 3 - 3.5 inr. My daily dose is variable between 5mg and 7mg. My Inr is very unstable, and if they add aspirin I have a bleed, so any aspirin product is out for me. So, we all have different tolerance, and drug reaction, based on our metabolisms,lifestyles, and food intake to name but a few. I know one problem I have is irregular eating due to my job, which plays havoc with my inr. So, yes it is vital you get the right Doctor, and right management. Once established, your Gp should be able to take the reigns locally, with all info, and support from your aps specialist. Get some booklets from HSF, from Kate, and give them to your GP, and ask him to read them; this should help you both.

Regards

Andrew