Discussions By Condition: I cannot get a diagnosis.

Littany of symptoms, 5 years, 3 specialists, no diagnosis

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Riodenver
  • February 15, 2009
  • 07:38 PM

I'll try to be brief.

I'm an otherwise healthy 35 year old female. After stopping taking the pill, symptoms began in earnest and progressed to current levels.

All symptoms are heightened the day before first bleeding of period. I'm hypoglycemic but blood sugar tests report normal levels, even while tested in the middle of an episode! I'm often fatigued and have achy muscles. The past few years I've put on 20 pounds, much of it around my belly. I get involuntary abdominal muscle spasms which repeat, rapid fire, for up to 20 minutes. Most are when I lie down for sleep, some days it's during the day as I walk around! During these episodes I have surging adrenaline to the point of tears. Cortisol levels are apparently 'normal' as is my thyroid. I've had 2 EEG's, and a brain CAT, all normal. It is NOT stress as it has now lasted several years. The spasms vanish after taking on sugar, something my endocrinologist doesn't even believe.

My endocrinologsit does almost nothing for me. My GP won't direct me to a new one. My gyno has no idea. The neurologists ruled out the spasms as being 'seizures', so they have no idea (it does move my whole body you see). I've all but stopped seeing them as the only thing that happens is negative; they take my driver's license, do no tests, demand that I see a psychologist, etc.

I believe it's my hormone function, adrenal function, or an issue with my glycogen production, but can't prove anything or find anything in tests. I had one hormone panel done, a saliva test over 1 month, which showed wildly changing estrogen and progesterone levels unlike a 'normal' female.

Any ideas would be VERY VERY WELCOME. You can imagine my distress.

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4 Replies:

  • Just a thought. Have you gone back on to the pill to see if that helps your symptoms?
    Patty M 1 Replies
    • February 16, 2009
    • 07:11 PM
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  • Yeah. When on it, most of the symptoms I've described vanish, which is precisely what leads me to wondering the connection to hormone function (something many doctors seem to know very little about). Unfortunately, the pill turns me into an emotional mess, and I won't continue with it.
    Riodenver 2 Replies
    • February 16, 2009
    • 10:45 PM
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  • I'll try to be brief. I'm an otherwise healthy 35 year old female. After stopping taking the pill, symptoms began in earnest and progressed to current levels. All symptoms are heightened the day before first bleeding of period. I'm hypoglycemic but blood sugar tests report normal levels, even while tested in the middle of an episode! I'm often fatigued and have achy muscles. The past few years I've put on 20 pounds, much of it around my belly. I get involuntary abdominal muscle spasms which repeat, rapid fire, for up to 20 minutes. Most are when I lie down for sleep, some days it's during the day as I walk around! During these episodes I have surging adrenaline to the point of tears. Cortisol levels are apparently 'normal' as is my thyroid. I've had 2 EEG's, and a brain CAT, all normal. It is NOT stress as it has now lasted several years. The spasms vanish after taking on sugar, something my endocrinologist doesn't even believe. My endocrinologsit does almost nothing for me. My GP won't direct me to a new one. My gyno has no idea. The neurologists ruled out the spasms as being 'seizures', so they have no idea (it does move my whole body you see). I've all but stopped seeing them as the only thing that happens is negative; they take my driver's license, do no tests, demand that I see a psychologist, etc. I believe it's my hormone function, adrenal function, or an issue with my glycogen production, but can't prove anything or find anything in tests. I had one hormone panel done, a saliva test over 1 month, which showed wildly changing estrogen and progesterone levels unlike a 'normal' female. Any ideas would be VERY VERY WELCOME. You can imagine my distress. Theres a couple of things here that can not be right. You can not be in the middle of Hypoglycemic episode with normal sugar levels, its not possible. Hypoglycemia means low blood sugar. That does not mean you are not Hypoglycemic. Hypoglycemia needs to be treated with a careful diet, eating small meals & snacks throughout the day, that does not mean mars bars & the like. If you diet is bad your sugar levels could be all over the place, going from low to high too quick can be very bad for you. A lot of the things you mention, weight gain & a rush from sugar intake, kind of indicates that you may well not be eating the things you should be eating. Also the spasms you talk about doesnt really sound like neurological, are you fully aware of your surroundings & what is going on ? Did you mean the neurologist said that they are not seizures or are you saying that he said they where ? Regarding stress, You can suffer stress for a lifetime, stress causes many problem & physical symptoms. Best wishes :)
    Tootsie 628 Replies
    • February 16, 2009
    • 11:26 PM
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  • Just to clarify - - I say hypoglycemic because I can feel my blood sugar levels tanking, REGARDLESS of my diet, which I would say is better than most. I was given two tests, one a fasting test the other where I purposefully had a huge carbohydrate meal. After that huge meal I had the spasms which I wrote about. They took blood and tested it DURING those spasms. All my blood sugar levels, fasting/spasming/after large meal, are always normal.- It's not neurological. The spams look like seizures, but after 2 EEG's and a CAT they've ruled out it being seizures at all. They actually don't know what they are. I sat in a hospital for 8 hours on anti-seizure meds, spasming like crazy all night, and there was nothing they could tell me. They went away when I finally got to eat!- the spasms are bizarre. I am fully conscious and can speak. It's like electric jolts in my abdomen which move my whole body. One time, the WORST time, I actually started slurring my speech and talking like a child. It only happened once, and, like always, no doctor could tell me what had happened to me.Okay, these are all interesting responses. I hope to learn more. Having the symptoms start to vanish when I take the pill tells me something. Also, because it's worse during my period, there's some link here to hormone imbalance......I think!
    Riodenver 2 Replies
    • February 17, 2009
    • 03:33 AM
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