newly diagnosed with aps.

[chapman]

( sorry about the spelling) hi. i was told that i have hughes syndrome last week but looking back i thing iv had it for a long time, mu symtonms are sickness,headaces,mostly on the left side,tingling hands,shacking, rapid heart rate,breathless,tiredness,momory loss and forgetting the most simple stuff ,feeling unweel, i had blood clots last year so im on warfin for life. i also have coaliacs. is anyone able to work with aps? and will i be able to work again? is there anyone with hughes syndrome that live in yorkshire? i feel very alone as nobody seems to know whot it is,not even the medical ppl. thanks stacey

[Manofmendip]

Hello Stacey

Welcome to our forum.

I have been diagnosed with Hughes Syndrome since 2002 and I work, running my own surveying practice.

With Hughes it is important to keep your INR at a level that will keep your symptoms managable and keep you safe from clotting. What is your target INR? With Hughes many people need to have an INR of between 3.5 & 4.5.

Best wishes.

Dave

[chapman in reply to Manofmendip]

hi dave.thanks for giving me some hope as i cant imagen not working. my INR target is 2.5 and on fragmin when its low. is that a good target? doctor thinks there might be something other to explain all my syptoms. thank you.stacey

[MaryF Administrator]

Hi there and welcome, you have landed in the right place, so much to read on here and lots of peer support with people who fully understand.. you may start to feel significantly better with the correct INR and supportive medication. It is often quite possible to have a number of autoimmune diseases at the same time, some of us have that, and you will not be the only one with coeliac issues. Best wishes. Mary F x

[chapman in reply to MaryF]

thank you mary. good to know im not alone. stacey

[Manofmendip]

Hi Satcey.

I second what Mary has said.

An INR of 2.5 would be too low to resolve the symptoms of most Hughes sufferers. I would try to get them to push it up to 3.5 to 4.0 and see how you feel. If you feel much better then tell them and see if they will let you stay there. When i first went on Warfarin they tried me a 2.5 and I still felt rubbish. Then Prof Hughes told them to try me at 3.5 to 4.0 and I felt so much better. I'm now on fragmin instead, as I was getting some other funny turns and I now find that I'm better on 15,000IU of Fragmin than on Warfarin.

Best wishes.

Dave xx

[chapman]

ok will speak to docter next week.thanks

[chapman]

thank you so much. iv had coeliac for about 3yrs and follow a gluten free foods. i had cancer in my phyroid about 10 yrs ago so on tablets. my vitaim d level was low so thay put me on adcal. iv taken a note( i forget everything) and going to see docter next week. this is the best mebership iv ever joined, pitty about my spelling. thank u to u all.lol.x

[Jade]

I am curious that you mentioned ferritin specifically. My ferritin has remained at 5 for at least 6 years, though my haemoglobin finally got back in range just last year. Do you know if ferritin is as important as haemoglobin. My docs don't seem to care.

[Sal0712]

I agree with all the above comments. Alot of the people above have had APS for along time and are very clued up on it. I live in Sheffield which is not far from you. My consultants at the royal Hallamshire hospital seem quite clued up, my heamotologist Dr Van Veen is very nice. You'll soon get an idea of what's what with the condition, although there will be new symtoms creeping up on you all the time, as I have found. I was diagnosed with APS two years ago after having bloodclots on the brain back in May 2010.

I love this site as its like having an extended family, and one which understands APS and all that goes along with it !! Welcome to your new APS family, hope we can help you along the way!!!

[daisyd]

Hi welcome, nothing to add but never worry about spelling a lot of people on here like me can't spell, but are pretty good at working out what we are trying to say

Xx

[chapman in reply to daisyd]

thank u daisy. i feel part of the hughes family already. just need to get a bigger computer sceen so i can see better as working on my phone internet. x

[GinaD]

Welcome! ( though I must confess I always feel a little strange saying that because I can not be pleased that anyone else has this diagnosis.).

We can all empathize with the feelings of fear, confusion and isolation, and we're all going to do everything we can on line to help you adjust.

Post away. And none of us are about the sloppiness wich inevitably results from posting on small devices. We're just glad you found us.

The hardest adjustment I had was in conquering the self doubt that leaks into my life from friends and family who, especially in the early days of my diagnosis, were fond of using the dreaded " but you don't look sick." line. they think they are helping me by encouraging me to " buck up" and all that. Bucking up is admirable, but much of our ailment is internal and can not be read by our aspect. They often had no idea what I was struggling against. Some of them still don't but 13 years into my diagnosis I have learned to disregard their opinions.

Again, welcome and post away. We gave sympathetic eears ( actually, eyes.)

[chapman in reply to GinaD]

thank u gina. i dont get ppl saying dont look sick just that i cant do this or go there,whot if.?? mostly my husband. ppl saying whots that. i just say,go on line. i get so tired. i feel alone at home but not when im speaking to u all. loving it!!!!!! x

[Salty]

Hello Chapman,

I agree with the others who commented that you may need a higher INR and you may need to add an anti platelet agent. Some of your symptoms also sound like you could have an autonomic disorder, ie the tachycardia, shaking and breathlessness. I have an autonomic disorder due to APS. You should ask your doctor to check your heart rate and blood pressure lying then standing after 1, 3, 5 and 10 mins. If your HR increases by more than 30 and/or your BP falls by more than 20/10 that increases the suspicion you may have an autonomic disorder causing some of your symptoms.

[chapman in reply to Salty]

hi salty. thank u for ur advice. im going to docters tmrw and got a big list of things to ask.that ppl have said. do u get out of beath doing the most simpel stuff? i stood at the sick to wash up and was shaking so much that i couldnt finish. do u get hot and then cold and being sick or hurging go be sick? iv ask docters so meny times to put me on a tread mill so i kick starts everything but thay never listen! im usaly ok when doing nothing. i can finall see light at the end of a dark tunnal. thanks. ill let u all kw how i get on.x

[chapman]

hi everyone. went to the docters, just as i thought. docter didnt kw whot hughes sydnrom is and no letter had arrived from specilist o my list of question was in vain. she did give me amitriptyline for headaces. will these tablets muke up warfrin? things are really bad. my marrige is failing, my heath is failing. cant work. pls tell me whot the point is!!???? stacey

[chapman]

hi sorry it taking so long to get bk,i didnt get a email aleter. my inr gets checked every second week unless its too high or too low. just have to wait for specilits app to come through. there is no point in going to doctors as thay wont know whot it is and been ill for over a year,and docs didnt do much.i have lossed my faith in them and thay would just say im depreessed but im not.just fed up!!. im taking 5.5 of warthrin at the moment as im was in rang.going to get check next week.as for family,my mother helps and doas her ersurch but my husband doas not and admitted he cant cope. so maybe i should start taking amitriptyline,im soooo tired, i have 3 probs coaliacs. no thyrod and hughed,all that make u tired,(suprised im awake .lo l)... doas st thomas hospital have as anul meeting and have u been? thanks apsnotbab, stacey,xx

[chapman]

hi thanks for the info. i hate going to my docters and at my sergary there all as bad as each other .iv lost faith in them. thay would only give me tablet and say im depresses.which im not!! just fed up. my inr gets checks every second week unless its too high or too low. i do have some support but not much. my husband admitted he cant cope. just another waiting game to see a specilist. im so tired. i have 3 thing that make me tired, coaliaces,no thyrod and hughed ( suprise im awake. lol) thank u.staceyx ps is there a anul meeting in london for hughes?

[chapman]

hi i also forgot to say.when i had a scan 7 weeks ago the hemoloy (blood man.lol) said that there was a gland on my kidnys.he said this is one of the signs of aps. has anyone eals come across this? :-\. stacey.x

[Salty]

Hi APS,

We're you tested by Prof Mathias or someone else? Chronic orthostatic hypotension is generally considered to be a form of autonomic dysfunction. Did they suggest increasing your sodium intake and/or florinef since you are symptomatic?

[Salty]

Glad to know you are in good hands.