Discussions By Condition: I cannot get a diagnosis.

Young child starving herself almost to death

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Archer
  • May 28, 2007
  • 10:37 PM

I wrote a long post on this and my login managed to time out while posting, so it's all gone. Argh!

Anyway - I hope this is in the right forum, if not please accept my apologies as I'm new here. Also apologies in advance for how long this is going to be.

First a bit of background. I'm female, was born in 1981. I was induced a month early due to my heart not beating regularly. I had a few (I think two or three) petit mal fits when I was a young baby, but other than that I was in perfect health - lively, friendly, ate everything put in front of me.

About a month before my third birthday, I had some seemingly minor infection, and about a week into that, I stopped eating. I mean *completely* stopped eating. Not that I would only eat snacks or junk or small amounts, but I literally refused any and all solid foods. I did not display any signs of hunger or appetite at all, and if food was put into my mouth I wouldn't even chew it, let alone swallow.

My fluid intake drastically reduced, and for some time the only fluids I would take were ice lollies.

For four weeks and three days, I ate absolutely nothing. I survived only because at a nurse's instruction, my mother put some egg white into juice for me. This was my only source of nutrients, and it's pretty amazing I survived on only that.

While I was starving, the following symptoms ocurred - though I don't know if they were symptoms of the underlying illness, or symptoms of the starvation:

- extreme weight loss
- total hair loss
- extreme lethargy
- incontinence
- lost ability to walk or stand unaided
- finger and toenails turned black
- skin went very pale
- bleeding gums

I have very few memories of this time (obviously, given my age and how unwell I was) but I do clearly remember being in the hospital (I'm told this was on the day my gums started to bleed) at one point and losing all colour vision, with severe hearing impairment (both returned to normal).

As this was Northern Ireland in 1984, facilities were relatively limited for rare or children's diseases. Doctors seemed to think I had leukaemia, but blood tests were negative. Other than that they could only say that I had had a virus. If any other diagnostic measures were taken, I don't know what they were - my family are reluctant to talk about it (as it is a very traumatic memory for them), and it has proved rather difficult to get a look at my own medical records (though I'm working on it).

One day, I asked for a cookie (I remember this, vaguely). I ate the entire packet. That was it - appetite was back and I gradually put all the weight back on, and the symptoms of stavation disappeared. My mother asked me why I hadn't eaten and my only explanation was "It would have made me sick."

The medical profession were glad I wasn't dying any more and left it at that - my family didn't want to tempt fate by searching for explanations.
23 years later, I have a few residual symptoms, but with most of them it's impossible to tell if they are a result of that illness, something unrelated, or just part of the normal spectrum:

- block eating, ie eating lots and lots of one type of food (used to be extreme, has faded a great deal now)
- very picky eater and cannot tolerate any kind of sauce or flavouring other than salt - it will make me feel physically sick
- cannot stand the taste or sensation of vegetables (though I love fruit) and consequently eat none (god bless vitamin supplements)
- very low body fat percentage (handy as I'm an athlete now)
- very hard to gain weight - I just don't gain fat, and it takes a huge amount of work to gain small amounts of muscle
- low blood pressure
- intense salt cravings
- occassional cramps
- fibromyalgia style pain, which is only releaved (and then only somewhat) by consuming very salty food
- some ADD symptoms
- memory problems
- used to be very prone to flu-like illnesses - in the last year or so this has greatly reduced
- sleep problems (again reduced very much over the last year)
- very poor appetite - being physically hungry does not induce the psychological desire to eat, and I can go a couple of days without eating - if I realise this is happening I have to force myself to chew and swallow
- some highly specific food cravings that don't seem to tie into menstrual cycle or anything else - by "specific" I don't just mean "chocolate", I mean a specific chocolate bar from a specific manufacturer; or I can be intensely hungry but know that the only thing I can tolerate to eat is a Subway Club on white bread (etc, etc)

I was diagnosed with fibromyalgia a few years ago, but I disagree with the diagnosis on the grounds that as of now, the symptoms are almost completely gone - I consider it a diagnosis of "I don't know what this means, but this will make the patient leave".

Trying to work out the identity of this mystery illness has been a kind of quest for me for many years. It feels almost like adopted people searching for their biological parents. This is something that helped make me who I am, and yet I have no idea what it is. Every headache, illness, quirk of my lifestyle - I always have to question myself: is this just me, or is this the result of my illness? Every time I don't feel hungry and skip a meal, I'm asking myself: am I just not hungry, or am I about to starve to death?

If this account means anything to anyone, I would greatly appreciate hearing from you. If you have any idea where I can look or who else I can speak to - books, websites, people to email, *anything* - please let me know.

This site seems like an excellent resource with some very knowledgable and helpful people, I'm looking forward to being a part of it. And thank you if you managed to read this much!

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4 Replies:

  • Maybe you "got into something". Such as poison, insectisides etc. It seems to me that you now have a eating disorder and could use some help with thatbut I have also known some very thin people who say they just forget to eat. Maybe you damaged your taste buds. Can you smell food? Your appetite controller seems to be off-kilter.
    rad-skw 1605 Replies Flag this Response
  • Hey Rad, thanks for the suggestion. Can you think of any poisons etc that would have that kind of effect? It always just seemed so strange to me that I was ill for a month, and then that was that . . . I wouldn't say I have an eating disorder any more than being a picky/fussy eater and, like you say, having my appetite control off kilter. In general actually in some ways it seems to work better than most people's - eg most people seem to want to eat more if they're in a particular emotional state, if the food is especially good, or whatever. The only thing that really seems to effect how much I want to eat is exercise - the more I'm working out or playing hockey the more I want to eat, and if I take a break for whatever reason my appetite goes right down. It's almost like I have very little psychological component to my appetite, if that makes sense. I've also been looking into Addison's - nausea and low appetite, salt craving, low blood pressure, low blood sugar (forgot to mention that - my blood sugar is often amazingly low, though levels in my urine are normal) and a few other things. The only symptom I think I *didn't* have was darkening of the skin. But, I guess whatever I had must have been fairly atypical, as if I was a textbook case of anything the docs would pick up on it. Roughly every couple of years I also have an episode that looks a bit like an Addisonian Crisis - for no apparent reason I'll get very bad nausea, will start to vomit up everything I eat (can't even hold down sips of water), will become incoherent, weak, faint/collapse, and start to hallucinate. Goes from totally fine to "look like I'm dying" in an hour or so, then clears up on its own in two or three days. It looks superficially like an Addisonian Crisis (any time I've gone to a doc with it, there have been no blood tests - just prodding my stomach and "You're dehydrated. Drink this"), though *if* that's what it is, there's no explanation for why I suddenly get better. Anyway - thanks for the heads up about poison - I'll see if I can look into what would last for about a month!
    Archer 2 Replies Flag this Response
  • I think Addison's skin coloration changes is only with PRIMARY adrenal insufficiency. You might have SECONDARY adr. insuff. and the ACTH levels are normal. Good luck. There are some odd poisonings regarding plants, but I'm not knowledgeable in that field. Poisonous berries etc. Maybe radiation. But I doubt you would have had contact with that. As someone with a normal appetite and cravings, I think you DO have problems with foods to an elevated degree. And yes, many of those things are related to Addison's. Good luck.
    rad-skw 1605 Replies Flag this Response
  • Hi, maybe your body PH is too acidic. Our body PH ACIDIC/ALKALINE needs to be more alkaline than acidic or we will be having many sickness, since sickness likes acidic environment. Try the following sites to know more about your body PH and the only money you will spend will be in a health store buying the right food. Go for organics!http://www.totalhealthlabs.net/showNotesDetails/84.htmlhttp://www.totalhealthlabs.net/showNotes.htmlHope you regain your health back and may God bless you!
    Anonymous 42789 Replies Flag this Response
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