An intro and some queries

[phoenix77]

Hi all,

I was diagnosed almost 8 years ago when I lost my daughter in the 20th week of pregnancy, although maybe should have been diagnosed after contraceptive pill caused dvt in 1993 or miscarriage at 13 weeks in 1995.

I now see a consultant at st mary's in london once a year (3mins maximum - lose weight, stop smoking and sometimes but not always a blood test). They don't seem interested in telling me whether any symptoms I have such as leg pains when walking more than a few hundred yards or transient but excrucuiating joint pains could be related. They didn't even suggest my history of migraine could be related. I asked them if I should take aspirin as a precaution and the response was 'it can't hurt but it's up to you'. Imagine my surprise when my migraines almost totally disappeared once I started the aspirin.

Last year they told me that they only test me blood to see if I still have antiphospholipid or if it has gone. I had never heard of it going away once diagnosed before - has anyone else?

Today I received a rejection from a life insurance company stating antiphospholipid syndrome as the reason they wouldn't insure me Has anyone else had a problem?

[Dani71]

Yes, first time I applied for life cover after being diagnosed I was loaded by 50%, 4yo when I applied again I was rejected! It was a huge shock. I get very confused about this condition because wen I visit consultants I get very general info & incredibly vague answers, but wen it comes to life or serious illness cover we r classed as huge risks....

[pumpkincake]

Antibodies can come and go but that doesnt mean the disease has come and gone. Unfortunately some doctors look at these blood tests like it is the absolute law of APS. It is frustrating. Mine have come and gone...and depending on the doctor they even wanted to take me off anticoagulation..saying I didnt have it anymore. I got a new doctor ASAP.

What a terrible shame about your being insured. It is a mixed message isnt it! ....and it makes NO sense! A few others here said they couldnt get home owners insurance because they had been tested for APS...shocker too!

I would take this bull by the horns and tell your doctor that it shouldnt be "up to me" what treatment I have...and hand them a stack of articles you can find here and various sites about APS.

I am glad you migraines are better...keep pushing the doctors for answers and thell them you need details and want to know what is going on. I used to be really quiet and just walk out of appts with hardly saying a word...very complacent. Not anymore... once my doctor knew that I was "on it" he stepped up his game with APS too.

[daisyd]

Hi

I am sorry for your loss awful isn't it

I don't want to worry you but I was on Asprin. It made no difference to me I still went on to have a Heart attack.

I think and I might be wrong but if you have Hughes syndrome and have a clotting event you should be put on a anticoagulant ?? Warfarin / Clexane

Your leg ache when walking could be intermitant claudication ??? spelling

When I had a DVT in the early eighties the pain was different to the ache I had later. I know that exercise helps when I went on the tread mill at the gym it really ached at first then it kept on improving, you need to see your Gp about this.?? Could you get a transfere to St Thomas'

Please please give up smoking I know how hard it is, but we really need to

Karen xx

[phoenix77]

I was told that I didn't need anti coagulant treatment because the only major event I have had were caused by something, (ie, the pill caused the thrombosis it wasn't spontaneous). It makes me nervous though I feel like I'm a walking timebomb sometimes.

I'd like to try for another baby before it's too late (I'm 35 so time is running short) but my husband is terrified something will go wrong and I may not come back from it either physically or mentally (I lost it a bit after losing our daughter).

Trouble is the doctors want to put everything down to my weight so maybe I need to lose some of that to get them to take me seriously (easier said than done with the PCOS which makes me fight every ounce).

I'll look into the possibility if intermittant claudication. Thanks for the tip.

I know I need to stop smoking and it will happen...

[Hidden]

If you take any kind of statin, that is likely to cause leg pain and cramps.

[Manofmendip in reply to Hidden]

Hi JimQ. I thought that too until I went to a Lipid specialist. He explained that most statins are quickly absorbed into the blood stream but are only slowly taken up by the liver and, while they are in the blood stream, they cause the side effects such as muscle pain. His answer was to put me on 80mg of prolongued release Fluvastatin, which is only absorbed into the blood flow at about the same rate as it is taken up by the liver. It therefore doesn't hang around in the blood to cause side effects. I've been fine with it since.

Best wishes.

Dave

[jessielou]

Hi Phoenix

welcome and glad you found us. I'm so sorry to hear of your loss and the struggle your having with medical profession.

All the symptoms you describe are very common amongst aps patients. Type symptoms olympics into search box above lots of info and a few giggles too. Also take a look at the Hughes foundation website at hughes-syndrome.org it's a great source of info too.

It is so contrary with regards life insurance, I can't get insurance and quite a few on here have had same experience and yet so many in the medical profession don't think it's that serious. Very confusing!!!

Aps antibodies ebb and flow, but as far as i know they don't go hon. Sadly.

I hope you well today.

Take care gentle hugs love sheena xxxxxx

[kathyD64]

Hi Phoenix so sorry to hear about your loss its horrid like many of us i too lost at 20 weeks but had my daughter at 30 weeks she is well & now 22. I agree with shenna about seeing if you can get referred to St Thomas's where they can assess you properly and assist you with a successful pregnancy - many go on to have babies hon so dont give up hope you just need the correct support, advice and most importantly for you and your husband to have confidence in your doctors. If you live close or in london and you cant get referred you can always get seen privately it cost approx £190 and more for bloods but they will liase with your gp and offer advice to support you.

I think once you get the support you need and someone to take all what you have been through seriously you can then focus on stopping smoking, and decide today you are cutting down when everything is all in the air i can only imagine the anxiety etc makes it hard to give up things that give you comfort. Take care be strong and take ownership of your future you can do it

love kathy xx

[haley]

Very interesting about the life insurance. Do you live in the states? if, yes, can you tell me which state and what company?

I have tested positive for the APS antibodies, tried aspirin and blood pressure meds without no relief of symptoms and so I take nothing no meds. I am taking X_FLM which seems to awaken my sleepy digestive system.

Recent blood tests show no antibodies though symptoms persist. I guess I should not retest, leave my negative test there for insurance companies to see!

[phoenix77]

I'm overwhelmed by so many supportive replies so quickly. I think I'm feeling it more than normal because tomorrow (May 7th) would be my little girl's 8th birthday.

The symptoms olympics is amusing and terrifying in almost equal measures. It is truly scary that the medical professionals charged with our care seem to know less than most of the people here.

Haley: I'm in the UK not the states so hopefully your insurance companies will be a little more reasonable. It is interesting to here that your antibodiy tests have become negative after being positive but that symptoms persist (I've sorry to hear it from your perspective but it adds to the body of knowledge from mine)

[GinaD]

My Father (in hind sight he probably had APS) was a doc who helped me decide back in the 80s whether or not I should see someone about the "strange" pain I had developed in my leg:

He said: "Stretch the uneffected leg in front of you with the knee straight and the toe pointed away from you. Now pull the toe back up straight and arc it through so it is pointed more toward you. Keep you knee strait while doing this. Now repeat this exercise on the effected leg. Does the nature of the pain on the effected leg change when you move your toe? If so, you may have a DVT and you must go to the ER now." I did, and I did, and now we know that was the first symptom of what eventually was diagnosed as APS.

I still remember this "test" which I use to determine whether random leg aches and pains should be ignored or acted on.

Hope this helps.