Discussions By Condition: Medical Stories

battled with illness all my life.

Posted In: Medical Stories 3 Replies
  • Posted By: nat423
  • June 13, 2008
  • 01:38 PM

hello people. this is my first time on this. guess i should start at the beginning. when my mum was pregnant with me she had gastoentiritis (dunno if thats spelt correctly!). when i had my first set of teeth they were black and fell out, the docs said that it was because my mum was poorly in pregnancy. a goitre was noticed when i was 6yrs old, i had scans and blood tests done, and although it was swollen it wasnt dangerous or needed to be removed, they said i would have to have it checked in adulthood. i was always a sickly child, even at the age of 6months i had chicken pox, and seemed to get everything at such a young age. i was a tired child, i had hearing problems and had gromits fitted in my ears. when i was 10yrs old i started fitting, the doctors diagnosed me with grandemal epilepsy, i was treated for 8yrs on tegretol, i went 2 yrs fit free and was weaned off meds. i went off to uni, i had a bad break up with my ex boyfriend and started to have blackouts, i lost a lot of weight, but carried on thinking it was only natural because i was stressed. i carried on through my last year at uni, i began to feel extrememly tired all the time, i was never a morning person and dragged myself out of bed. when i left uni i worked long shifts at a hotel, i went part time, i dropped 2 stone in weight and had severe headaches, feelings of being removed, weakness. i was referred to a neurologist who diagnosed me with complex partial epilepsy in 2004. it was a shock to me, it affected my life so much, i suffered from insomnia and deppression. then in 2005 my father left my mum and me, it affected me severly, i was very close to my dad and he just dissapeared without saying goodbye, i havent seen him since. my symptoms came out more than ever at that time. i went into hospital and was given a prolonged 2wk eeg telemetry test. i had all the scans done, no evidence of epilepsy was found in my brain. my boyfriend at that time then decided to leave me because he couldnt cope with my illness and the way my dad leaving affected me. needless to say i never want another year like 2005! i was then diagnosed with non epileptic attack disorder in 2007, the neourologist said she didnt think i ever had epilepsy even when i was younger, that in actual fact they were faints. whilst waiting to see a specialist for this, i went to my doctors to get my thyroid checked out, as i was way into adulthood and hadnt had it done. they did an ultrasound scan on my neck and took lots of blood samples. 2 weeks ago i went to get my results. the proffessor in the endocrine unit was asking me questions like 'did i tan easily?' i very proudly said yes! he noted my blood pressure, and i went dizzy when i stood up. with my symptoms being daily such as headaches, dizzy spells, fatigue, tiredness, weight loss and not being able to put it back on, feeling the cold...the list goes on! the proffessor told me it wasnt my thyroid that was the problem. and that he thinks its my adrenal glands. id never heard of the adrenals before. he suspects addisons disease. i am going on to the hospital ward in two weeks to have an acth/atch?? test done. i know its a proccess of elimination, but my head is spinning thinking is this possible??? all my symptoms point to an adrenal disfunction, but how could they have got it so wrong?? my grandma had pernicious anemia, and my mum had health problems but none of them were tested for adrenal disorders. now im 29 and facing yet another option, i battle through every day, constantly tired, am sick of feeling like this, i sometimes think its best u dont know coz then it cant hurt u, im like a bloomin pin cushion! being poked and prodded by specialists. i just wish they could find a cause to my symptoms and i can regain my life back. i hope that theyve got it right this time and it can be treated. im just trying to stay positive and have the tests done. fingers crossed! thanks for listening. nat.xxx

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3 Replies:

  • Your grandma had pernicious anemia? Did you tell the docs this? This is VERY important...do you have a copy of the blood test they recently did? I would ask to see the blood tests and see what your B12 levels were. If they are under 400 I would highly recommend asking them for a uMMA test (urine methylmalonic acid test). You may need injections of 1000mcg of methylcobalamin. B12 deficiency can lead to pernicious anemia and can cause a host of neurological problems. Yes, your thyroid may certainly be an issue, but please also make sure they thoroughly look at B12 deficiency - the two problems often go hand in hand. And B12 deficiency is nearly always overlooked by docs and inadequately treated. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • hello. thankyou for your replies. i didn't tell the proffessor about my grandma having pernicious anemia because i didn't find out until last week, although i did ring the specialist nurse and told her when i found out. i will be sure to ask for the relevant tests to be done. ive had several blood tests done, but not sure what they've tested. ive had my appointment through to go on the day ward for a synacthen test. i think that's to test my cortisol levels?? they dont seem to want to tell me much at the moment. i guess i'll just go through the relevant tests and scans to see what could be the cause of my symptoms. im so confused at the moment! ive always known about epilepsy as i was treated for it for so many years, although it seems like all the medication i was having was for nothing coz i don't have epilepsy!! i know very little about the adrenal glands. i didn't even know i had them till a few weeks ago! but researching them i can see how important they are. i feel bitter sweet, one one hand i want them to find something, but on the other hand i dont! guess that's natural though.
    nat423 1 Replies Flag this Response
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    Anonymous 42789 Replies Flag this Response
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