My path through the minefield too dia... - Hughes Syndrome A...

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My path through the minefield too diagnosis.

jessielou profile image
12 Replies

Hi all

As a child as far as I can remember I didn't really catch all the colds and bugs my siblings caught. Always had severe reactions to insect bites and stings. Always suffered with abdominal pain and problems with stomach.

Into teenage years repeatedly suffered migraines, tonsilitus, glandular fever, problems with knees and ankles, looking back not helped by long distance running (which I was very good at.

At 17 started taking the pill. Had a massive migraine attack, in bed for weeks, so much pain. Gp stopped the pill, said severe reaction, In the following year I had my first and second early miscarriages. Although I was young it hurt so much. At 19 after a horrendous pregnancy, threatened miscarriage 3 times, repeated kidney infections (pylonephritus) then an emergency c-section I had my first daughter now 27. She was tiny but perfect, then discovered she had a heart murmur, was a frantic and worrying first year hoping it would close. It did thank goodness!!!

I left her father as he regularly thought I was a punch bag. A traumatic time and a long story better left alone.

I spent a few years alone raising my daughter eventually met and married. We decided to try for a baby only to be confronted by infertility, many rounds of tests, treatments (hormone drugs caused major problems) my third miscarriage during treatment. We were devastated, our marriage didn't survive!!

At 28 and in a new relationship again we wanted children but again infertility, tests treatments,strange antibodies showed up in tests, but not taken further sadly. At 33 we took the decision to give up trying (too much heartache). A year later after another awful pregnancy, my second daughter was born by emergency c-section, both of us lucky to survive, my heart went into irregular rythm. She was fine and I couldn't believe the gift i had been given. My fourth and then fifth miscarriages followed the fifth so traumatic at 18 weeks, the only natural delivery I had!

A year later after spending most of the pregnancy in hospital my son was born at 34 weeks, a clot behind the placenta. Again he was tiny, he had hip problems and at 3 diagnosed with autism.

My sixth miscarriage followed along with a breast cancer scare, again a marriage falling apart (his solution go get drunk etc.)

I met my current partner at 40 we were running a busy pub, coping with son's autism, the breast cancer scare, my nan died, I had my seventh miscarriage we were devastated, but survived. in Jan of 2007 I had my last miscarriage then in April a dvt and pulmonary embolism. Severely ill for a long time.

We moved out of pub ( rent about to double) in may 2007.

I had A hysterectomy in 2008 no more!!!!!

All this and no idea why.

Moved to different council area changed gp in Oct 2009. In Jan of 2010 i saw article on bbc news about Hughes syndrome, thankyou to the family whose involvement, helped me too get diagnosed finally.

My present diagnosis is Hughes syndrome, lupus symptoms overlap and fibromyalgia.

I also have asthma, allergies, degenerative disc disease, hiatus hernia etc.

I take warfarin, atorvastatin, plaquenil, pregabalin, tramadol, antihistamine, asthma meds etc.

Apart from this lousy chest infection, I'm starting to feel better,especially when inr high!!!!

We just took over pub and are really happy. My eldest daughter living across the road with her partner. Al myself and our 3 kids (my 2 and his son) looking forward to a better future!!!

So thats my nearly full story if you made it this far, thankyou, sorry its long!!!

Take care all, gentle hugs and love sheena xxxxxxx :-) :-) :-)

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jessielou profile image
jessielou
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12 Replies
jetjetjet profile image
jetjetjet

well my friend , that about says it all , quite a journey. heartack, disappointment, broken heart, but not the spirit, you are certainly an amazing person. this i mean whole heartidly. its a good thing to let out. as my belovid doc said to me, and i will never forget, the mind is a very powerful thing. also laughter is great medicine. it seems to me your best foot has always been forward. dont ever lose this as it has and will always serve you well, it has my pleasure to have had the opportunity, and the pleasure to have made your acquaintance. your friend as always jet

Sue2803 profile image
Sue2803

You tell a truly inspirational story, thank you, You are an amazing person, a lot of your story runs along the same lines as mine.

Sue

x

MaryF profile image
MaryFAdministrator

Hi there, so many familiar things, including reaction to contraceptive pill and insect bites... my luck to be living less than a mile from St Thomas' at the time of my fist pregnancy - sore legs etc, and with the knowledge of what had already happened to both my sisters in terms of PE and dvt's. Also the tonsilitis/kidney infections, plus my daughter born with heart murmur and small valve. Very well told.

Mary F X

Storky profile image
Storky

Ah Sheena! I want to give you a hug! Sometimes I think it is those with the fighting personalities that are destined to get these horrible things happen to us because we have the strength of character to deal with it - doesn't make us feel any better though does it?

I hear stories like yours all the time and I am so proud of you for being a surviver, as so many others would have just given up.

I hope the worst is now behind you and you can look forward to calmer years with your health more in your control.

Well done! x

Rebecca_H profile image
Rebecca_H

Ah thanks for sharing Sheena, that is quite a story, one to be proud of. xxx

paddyandlin profile image
paddyandlin

sheena,

You are a star and your story is as others say like so many others but it is heart felt and that I thank you for letting us see what you have been through and what you have overcome.

You are a great lady

Paddy

jessielou profile image
jessielou

Hi all

A massive thankyou for all your comments, is first time i have ever shared so much of myself. I hope that by doing this others will keep fighting.

Battered bruised but getting up again. Sounds like boxing with mike tyson.

Seconds out round 16 and still smiling. :-) :-)

Someone once told me ' you only get given the shit your shoulders are broad enough to carry. I don't want them, but mine must be awful broad!!!'' :-) :-)

Thankyou for the hugs and support to all my friends walking with me. :-)

Love n gentle hugs sheena xxxxxx :-) :-) :-)

Suzypawz profile image
Suzypawz

Hi Sheena, you are a very special lady & you have been through so much & you are a truly wonderful person to be around :)

Keep that fight with you at all times,

Guess what I'm doing ? ......drinking coffee in Croyden, in from of a log fire, bumped my head on a low ceiling beam!! :( once the stars have stopped going around my head we may have some dinner together!! so for now going on laptop for a bit waitin for the guys to go on stage!!!!!

Sue xxxx

SharontheSheep profile image
SharontheSheep

Hi Sheena, big gentle hug right back to you. I just can't believe how similar our paths are, what with bug bites and the pill right down to miscarriages and divorces (boy we went through our share of frogs :) , princes only now :) :)

Glad that you are now living in happier times.

Love Sharon x

sbncmo profile image
sbncmo

My husband has APS, but I have so many similar symptoms to what you describe that it's scary - the bug bites, abdominal pains, problems with the pill, multiple miscarriages, high risk pregnancy that kept me in the hospital ending with emergency c-section, frequent & severe migraines, tonsils that had to be removed when I was 12, asthma, degenerative disks, etc. It makes me wonder if I have something else I need to have checked. I'm sorry to hear that you have had to deal with so much of this with rotten husbands, but you have good support now - he's a keeper. I'm glad things are a little better since you have him to help you. Keep taking care of yourself.

Shelia

jessielou profile image
jessielou in reply to sbncmo

Hi shelia

I think maybe you should talk to doctor and see if they'de run bloods and see. Not saying you have Hughes, but worth checking. I hope you and hubby get sorted and glad he got you supporting him. We need that..

Thank you for lovely comment about my partner, he definately a keeper!!

Take care gentle hugs love sheena xxxxxx :-) :-) :-)

sbncmo profile image
sbncmo in reply to jessielou

Hi Sheena

My doctor just ran an autoimmune blood test a couple of weeks ago & it came up negative, almost the bottom number in fact. It's frustrating when dealing with a lot of things (over 30 health conditions). One I'm dealing with is that the nerves for my waist down are being severed & sometimes I lose all feeling & drop unless I have something or someone to catch hold of & the rest of the time, my legs are just weak & I have trouble getting my feet off the floor sometimes. My neuro is doing a nerve conduction study on me next week to check me out. But we'll get things figured out.

Thanks for the encouragement. And I agree, I don't know where I'd be without my husband & son.

Take care.

Shelia

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