My name is zoe and this is my story.
At xmas this year 2005 i became un well. had two bouts of what ithought was very severe cystitus abdominal pain frequent urination. this cleared up. i had just been put on the pill prior to this but gave me allergic type spots so came off it doc said may have a problem with oestrogen. i then was on drug minocycline for a few weeks to clear up the spots came off that. A couple of weeks later woke up with bright red face texture of sandpaper. Doc prescribed me anti histamines which i took. Was ok for a week then started getting facial swellings severe head pain also became very weak just about enough energy to go to shops. went to dermatologist desperate for help. She thought i should be admitted to accident and emergancy. said to come there the following day. In the night had severe pain in legs and stomach and breathing difficulties could not get up off floor in so much pain. A and e ran blood tests found no real abnormalities thought had a possible auto imune disease possibly lupus and gave me a follow up appointment with a rheumatologist and ultra sound scan. Was in pain for a week or so when went home could not sleep and hard to walk vision blurry too. Rheumatologist thought i had a drug reaction to minocin and the rest was all caused by stress. I was never a stressed person before this happened to me and was extremly healthy.
My symptons died down in there severity but are still extreme phases and generally un well all the time. I have had to quit my job and come and live with my parents i am 28. since january i have lost a lot of weight about 2 stone despite eating as much as i can. i lost my period for two months. my hair is falling out. My skin peels off small amounts evry day. i have swellings in my face which go up and down. my jaw has become enlarged and can be very painful at times. my eyes are sunken and just look funny. i have rahes and flushes on my face and acne now. my fingers look wider bone looks like it has grown. i have had terrible headaches which i have collapsed from and my body suddenly will go weak all over pain on left side too. i look in shock after these collapses and loose my co ordination. I have had breathing problems during these attacks.
i have been to a and e after the event they do their regular events and send me home. my doc thinks i had severe reaction to drug possibly and that i am stressed. she tried me on steriods but this made my jaw swell up and made me feel sick. i have just changed docs cause of her attitude she sent me to phychiatrist who said that i was not mentally unstable anyway. my new doc thinks i may have problem with my pituatary gland and i am getting to see endocrinologist. my doc said some of my hormone levels were a bit low i think for tesosterone oestrogen stuff like that.
Because of my headaches and collapses was sent to a neurologist who said there was no neurological problem but sent me for mri brain scan because of the headaches. brain scan was normal if there was something wrong with my pitutary would this not be detected on a brain scan??
Other tests i have had show i was positive for ebv virus but had this before and know symptons not the same. also excess protein in my urine on three counts. my dermatologist thought i had angio neurotic odema but has failed to do any further tests or find a treatment that works. other docs have said it it viral. these headaches and collapses and change in facial and body appearance are really really scary i know my mood has changed to i do become excessively anxious. but its like its coming from my body itself. the headaches and weakness and rashes seem to come on after i have exerted myself or got elated in some way. i just don't feel like myself at all.
i hope the endo can identify the problem my life is complete hell and i think i would be better off not being here than feeling like this. i really think i should be admitted into hospital not being in this state i know there is something not right with me at all. until then im pretty much having to stay in bed.
First of all, your post was very hard to read. So I extracted all your symptoms and listed them as follows:
1. abdominal pain
2. frequent urination
3. allergic to minocycline
4. severe pain in legs and stomach and breathing difficulties
6. weight loss
7. irregular periods
8. hair falling out
9. skin peels off small amounts evry day
10. swellings on face which go up and down
11. jaw enlarged, very painful at times
12. sunken eyes
13. rashes, flushes and acne on my face
14. fingers look wider bone looks like it has grown
15. terrible headaches and weak body
16. breathing problems
17. ebv virus (Epstein virus ???)
18. excess protein in urine
19. mood change
20. excessively anxious
I am not a doctor but you sound hyper to me. Please bring the list above and go back to your primary doctor. Ask for a full panel thyroid test. That's the only way to know if your thyroid is malfunctioning. When the thyroid malfunctions, every organ in the body is in trouble. Think of it like the main fuse box in your house. It controls the electricity in the whole house.
I will pray for wisdom to guide you and your doctors to good health. Keep in touch and let us know when you get the thyroid results.
You might want to be tested for Lyme Disease too especially if you have been bitten by a tick. The Lyme Disease test are really not that accurate, and mainly the docs go on symptoms. You might want to check out www.canlyme.org. Hope you feel better.
I wish you health and hope you find out the source of your health problems soon. It sounds like you need to find a really good detective for a doctor. Do you have friends or relatives that can recommend a good one for you? There are also lists of top docs on the Internet so that you may be able to find one near you.
You need to back to your doctor. The growth in your hands may be an important symptom to bring to their attention and can be related to your pituitary gland. Did they check you for Lyme disease at the emergency room?
I was hyper thryoid for a long time, with hair loss, skin peeling, weakness, sleeplessness, shaking, sweating, irratic thought, anxious, loss my period, skin problems. They did a very easy and quite routine thyroid panel checking my free T4, free T3, TSH and antibodies as well as other things, but being as symptomatic as I was, this test was very conclusive. If this hasn't been done in your case yet, it must be done immediately, as well as checking your pituitary gland, perhaps with a CAT or MRI. You've been horribly symptomatic for a long time. Don't let the doctors put your tests off. Press them for immediate care and better diagnosis.
Thank you so much for your help. i have an appointment with an endocrinologist tomorrow hurrah!! i think he did some preparotory tests for t4 and tsh at least. I don't think i have had full panel done before now but then i did not what this horrible thing happening to me was?? however i made my doctor do some hormonal tests for me. and in my immunochemistry lh and fsh came out as being lower than normal. my new doc i swapped to him this week thinks it could be related to my pituatary gland. Have had an mri brain scan done and their seem to be no abnormalities.
I am concerned however that this whole thing may have kicked off from viral attack. i had this spot on the left side of my face and little spots gathered and spread out from it and then just dried up. i have two smallish blisters emerging out of the area now. i am concerned that this may be a type of herpes and that it may have even infected my spine or brain and lead to all off this. should i mention this to the endo?? I will probably sound neurotic but unfortunately when left without medical help you have to look to the causes yourself. Lyme disease possibly this was a tick but im not really sure that this type of thing is that commen in the uk.
all i know is i feel reallly sick right now and this is all so frightening i don't want another headache and collapse. all my friends can't believe what is happening to me either its so surreal. I just want to feel like myself again.
im praying il get through tonight ok and that the endo might think its a good idea to admit me into hospital i see no other way of getting this mess sorted out.
Do you know anything about Lh or fsh levels?? Are there anything that i should strongly put to the endocrinologist tomorrow??
I cannot tell you what strength and courage it makes me feel to know that you guys are trying to help me!! And you have your own ordeals too.
...In women and men, FSH and TH are ordered as part of the workup of infertility and pituitary disorders. FSH may also be ordered to determine if a woman has reached menopause. FSH levels also help to determine the reason a man has a low sperm count. In children, FSH and LH may be ordered when a boy or girl does not appear to be entering puberty at an appropriate age (either too late or too soon).
...In women, FSH and LH levels can help to differentiate between primary ovarian failure (failure of the ovaries themselves) and secondary ovarian failure (failure of the ovaries due to disorders of either the pituitary or the hypothalamus). Increased levels of FSH and LH are consistent with primary ovarian failure...
Low levels of FSH and LH are consistent with secondary ovarian failure due to a pituitary or hypothalamic problem.
Saw endo it was great. he told me not stress im physically ill. thinks it is pituatary problem possibly underactive having urgent tests at the hospital this week im sure il be on this board a lot the to come to terms with what has happened to me.