I swear I'm going mad!

I'm 20 and know I have APS. All the symptoms are there. I had a DVT when I was 16 and had a late miscarriage last November and started to do my research. I have various other signs too but those are the big ones. I have seen 3 different gyno doctors and they still keep telling me there are more tests they want to do. They have taken over 20 tubes of blood, scanned my pelvis and womb, prodded and poked and I am still no closer to someone saying 'You have it!'.

I feel like I'm loosing my mind. Even my husband is fed up of hearing me bang on about APS all the time.

I'm just looking to start a family. I was told when we lost our first baby that I would need to have a baby before 23 as I am at high risk of having a PE whilst or after pregnancy that I worried I am running out of time.

Please if anyone has any information about how to speed things up, any info on getting pregnant and my chances of having a baby then please write to me.

Thanks

x

13 Replies

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  • Hi hon

    I'm sorry to hear of your loss, you're so young hon, just not fair!! sorry too about docs not getting things sorted! You are definitely not going crazy, although battling Hughes/Aps and the medical profession can make you crazy!!! :-) :-)

    Once diagnosed aspirin and heparin increase chance of pregnancy success considerably!

    From what you describe It certainly sounds like you could have aps! I wonder if you can get a referral to the louise coote lupus unit at St Thomas's hospital, (not sure that they do private there).

    As I've said in other blog not sure about cost at london lupus centre at London Bridge hospital! Usually about 200 for first consultation, not sure about cost of tests, they will refer you back to nhs after diagnosis! I think you can self refer!

    Hope you ok tonight

    take care gentle hugs love Sheena xxxxxx :-) :-) :-)

  • Hi Ya out of all the bloods they took do you know if they screened you for APS antibodies?

    it is so frustrating for you - sorry you lost a baby and it seems odd they gave you an age in which to get pregnant by that seems most odd and to say about your risk of having a PE seems to mean they do have blood results... are you in the UK? i went recently to see prof Khasamastha (not spelt right) he is fab i would highly recommend you seeing him the £220 cost will be well worth it then you can get a letter to your gp recommending a referral under the NHS to ST Thomas or your team will then have an experts advice to follow...

    you could ask your gp for a copy of your blood results they should be able to print that off for you to take...

    Once diagnosis is confirmed then you can get the correct support and treatment for starting your family but dont think you got to do it by 23 that part does not make sense to me at all... it suggest your team currently are not fully informed to give advice so please dont worry about that bit all in good time i am sure you will be nursing a baby just get the diagnosis - its hard when so young but sometimes you need to be assertive dont let them steam roll you - there is plenty of information on this site you can print off to take

    good luck hun but please dont think you are going mad - you are just desperate for answer and proper care and understanding once that is explained to you and your husband he will also beable to understand and support you much love kathy xxx

  • Hi there, where abouts are you located, as that will help member help you further, St Thomas' is the place, I got there in the end, although first of all I went privately to London Bridge. Your GP could refer you to St Thomas, and as said above, try and get all paperwork together, collect everything you can, list also in bullet points, list of events and treatments from as early as you remember etc and above all keep calm. With best wishes. Mary F x

  • All the aboive is good advice so folow it and good luck

    paddy

  • Thank you everyone for your advise. I'm just glad to know that someone does understand how this process works. I'm sure this is what I have but my doctor keeps looking at me like ' Well you look fine and there is no real issues'. Well there is.

    I have been tested for Lupus and APS but need to wait for my results in mid July and that together with another scan of my uterus will determine what we do next. I know everyone says your young but me and my husband are ready to start a family and after my DVT they gave me 6 days to live without treatment so I'm taking everyday like it's my last. I have done a lot of growing up (some say too quickly) but we are financially stable, bought a house, have been married for 2 years and have the support of my family.

    I just can't face loosing another baby. He was my word when I was pregnant and my world got taken away from me. All they have advised me is to take a baby asprin in the 2nd half of my cycle to help inplantation and any placenta issues to be reduced.

    Has anyone got a successful story of loosing a baby and then going on to have a health one? I need to find hope that I'm not going to be infertile.

    Thanks again for the comments. xxx

  • "six days to live without treatment?". How on earth did they come up with that? I have had many, many DVTs - all prior to diagnosis-- and though I was aware of the risk that these could turn into PEs, even PEs are survivable with luck and care.

    Sounds like you need to seek another opinion. This " by age 23" business may stem from the same odd predictions as this " 6 days" nonsense. Predicting medical outcomes is a game of chance. My Father probably had APS. He had a string of leg ulcers and horrendous varicose veins which had their origins in boot camp during WW2. He became a doc, spent hours on his feet in the ER, but though he theorized that he ( and probably me) had something " like lupus, and yet not like lupus." he remained un diagnosed. He died in 1990 of Cancer. Cancer. Not the " lupus like illness.".

    Try and chill out a bit. Yes, this is serious, but many of us have lived for years with this disorder. Knowledge and a good doc improve the quality and quantity of life, but I don't think you should be on a daily look out for the grim reaper.

    I know that given thus time line you have been given you are frantically impatient. I'm not the doc here, but I discount this time line. Try and get to a major diagnostic center in whatever country you are in ( ask for reviews from us on his site, ) and take a few good deep breaths.

    For what its worth --we're all with you in spirit.

    Gina

  • Yes, but make sure you are on aspirin and heparin. I needed both. I lost the pregnancy with only aspirin. I had a very healthy 10 lb. baby boy with my treatment & I was 33. By some miracle I had my daughter with no treatment at 28.

  • Like Mary I had to go privately to London Bridge.

    If you can possibly afford it Prof. Munther Khamashta is the one to see as he specialises in pregnancy in Hughes patients.

    hope you can get som answers soon.

  • Hi hon,

    I have had quite a few miscarriages, but I do have my three miracle children, that survived without treatment and before diagnosis.

    I know I wouldn't have lost so many little ones if I'de been diagnosed and treated earlier!

    Treatment with aspirin and heparin injections is current practice for Aps patients. As above Prof Kamashta at St Thomas's or London Bridge is definitely where you need to be!!

    Take the aspirin as suggested, but really need diagnosis and treatment before getting pregnant hon!!

    A lovely lady on this site, Rebecca recently gave birth to a baby girl, following a nervous pregnancy, with treatment above and lots of wishing from all on here!! Many others have children despite the Aps and other conditions!!

    Hang in there hon and know you got us and are not alone!

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • Why would they tell you that you need to have a baby by age 23? Did they say why you are at a high risk of having a P.E.? When you had your dvt at 16 what did they say caused it? I think I would find a different doctor, what this one says doesn't sound right.. You can have a very successful pregnancy with aps, alot of us have. I had a heart attack while pregnant, and did just fine...

  • Hey, Im the lovely lady (thanks Sheena!!). My baby girl is almost four months old now. Before I was diagnosed I lost a baby girl at 19wks gestation. With aspirin & heparin I went full term. I'm the grand old age of 26!! Try not to panic, you still have loads of time. Best of luck, email me if you have any questions x

  • Hi Rebecca

    you're welcome hon, gosh 4 months old, where does time go, good to hear from you, hope you all doing ok!

    Love n big but gentle hugs Sheena xxxxxx :-) :-) :-)

  • Hi Sheena,

    All well at the moment thank you :) Yep, cant believe 4months on Friday, My face hurts from smiling at her all day! She's found her voice now and Im sure she will start rolling soon. Hope you are well too xxx

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