Is anyone else scared out of their mi... - Hughes Syndrome A...
Is anyone else scared out of their minds? I am scared, and my doctors have not even told me a part of what I have learned on this site.
Hello Just a quick message. I have APS was diagnosed last year two previous miscarriage and one at 16 weeks - i was investogate for APS, which I now know I have. Everyones case of APS is different in terms of the affects it has on your life, so its important to understand how to affects you personally. How did you come to find out you have APS? There are mild to more serious forms of APS.
Miranda
I've also been scared. I have bad anxiety anyway so this site as brilliant as it is has also made me a little more worried. But my doctors said many people have no symptoms and see go their whole lives not even knowing they have APS. We are pretty certain my grandma had it and she lived healthily to 95! Everyone is different- keep a positive outlook. Don't let it dominate your life x
sometimes it scares me , esp the last few months as been unwell , but on the whole try not to worry , the key is to be under someone that understands the condition , sending a hug for you xx
Hi there, firstly please don't worry, a lot of us on here arrived years after diagnosis should have taken place! Your doctor is on the ball to have diagnosed this, I am pleased to here this. I am 48 and live with a multiple of disease, and am still going strong! There are many positive cases on here! I get by just on aspirin by the way currently, despite a history of clots in the past. I hope we can collectively reassure you. The worst thing is not to have a diagnosis, as things can get out of hand, do fire away any questions you have and worries, we are here to help. Mary F x
Yes I could get scared if I think about it so I try not to think about it but that is what works for me 
However I do note everything on this site, I look after myself well and do as the doctors tell me. Just because I don't think about it does not mean I am not aware of the stuff that can go wrong.
I tell myself that I am the same person as I was two months ago before diagnosis but I now have the proper care, drugs, good GP care and a consultant whom I trust. I am in a much better place with a diagnosis. I had this for 20 years and really was a walking time bomb without the necessary treatment.
I am sure it is perfectly normal to feel scared but we are in this together and we need not feel alone.
Much love,
Lynn.x.
It seems that other parts of the world are more up on this condition. I live in Houston TX and we are supposed to have some of the World Class Health Care professionals in the world. I have been unable to find a doctor that has treated an APS person before. It is so frustrating. The doctor I go to now told me she would have to refer to her text books. That makes me uncomfortable. This is the third Rheumatologist I have been to. Should I keep looking, should I look for another type of doctor? I already had a stroke from APS that is how I found out I had it.
Linda
Hi there, now you had said where you are, you should get some more localized replies, and others may be able in the USA to advise you as to where to go, and medical names for her to make contact with: There are some names on here, and of course other membesr may know about some of them. You could always ask a question for nearest care to your area, or trusted expertise. As a new question,
Do please also show your doctor this site: hughes-syndrome.org/ Also if you want me to find specific medical papers for your to print out,again we can help with that, just le me/us know. Mary F
Hi hun,
All what you read on here will not neccercelery apply to you, many of us have different ailments !
Now please try not to get stressed out about your condition, stress will not help so try to stay positive.....I know it is hard when your feeling poorly.
Chin up chick your not alone & this is a good site that gives good advice.
Big hug X #___(((*.*)))___#
Linda I hope you find a good doctor soon. That provides you more assurance with your future. I live in North Texas and am treated by a specialist in APS. She told me together we would ride the waves of the disease. You do have good days and bad. With proper medication ( I too am only on aspirin, it's the plaquenil she increases) you will return to normal. I still can't stand bright lights, big stores, over stimulation. I still have dizziness from time to time but overall I have returned to a "new" normal. Texas has some of the best doctors!
I know that Texas does have some of the best doctors. I am just having issues finding one that has experience with APS. Which is frustrating due to having one of the best Medical Centers in the world Texas Med Center. Could you ask your doctor if they know of someone here in Houston who could better help me?
The American APLS site should be able to advise you. The big problem with that site is they are haunted by trans gendered, biker sex trolls and I got tired of seeing their email solicitations in my in box.
Linda I will. She is a rheumatologist. We are limited in physicians in my little town but we have a neurologist and rheumy both who specialize in treatment of all forms of APS. I have PAPS. Hang in there. It's easy at first to want to give up, be frustrated, scared, and feel like your in quicksand with no one to pull you out. Your doctors don't seem to understand it. Your family doesnt understand it. Help is out there. Feeling better is on the way. Oh and I was placed on an antidepressant that also helps migraines called amitriptyline. can handle everything better now and makes me sleep like a baby. Will check on that dr for you. Kathy
I think I may have found a specialist. I am going this time to a hematologist. I looked on the American APLS site and found one. I called and asked if they were specialists in the area of APS before even making an appointment and they said I was in the right place. I started to cry. This will be my fourth doctor. Please let it be my last. I love this site. Thanks everyone.
Linda
Good luck with your appointment i hope you have at last found someone that can help you it does sound very positive big hugs from the uk kathy xxx
When I was diagnosed, I was relieved. It was an answer, and didn't sound serious. The hemotologist said that although there may be some serious side effects, as I'd look after myself more carefully I'd probably be healthier than people with out problems. Over time however, I picked up little bits of info and started to get scared - I came to this site when it turned to fear. At first, I felt great knowing others had similar problems, but I got scared again when I read just how bad some other people are.
Finally, I put it in to context - there are probably loads of people out there with this condition, who have such mild symptoms they never feel the need to join a site like this. The people here probably represent some of the worst problems, so it follows that you shouldn't except to get really sick just because others are.
that said, I've found this site to be wonderfully supportive, and helpful.
personally, I would prefer a doctor who honestly told me they needed to refer to books than one who assumed they knew everything when they didn't (but it was probably the way it was said which put you off - go with your gut!) Good luck with the new doctor
