Discussions By Condition: I cannot get a diagnosis.

my health story

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: alexburton
  • April 10, 2008
  • 04:02 AM

Several years ago I was injured and my philtrum column(the ridge that attaches the nose to the upper lip) lacerated. One of the columns of the philtrum broke. I was tested for possible nerve damage at the time, a nerve conduction test was done among others. Nothing came up nerve wise all there was was the physical aspect of the injury as well as what I would call twitches around where the injury occurred. After the twitches continued my doc ordered some more tests. A brain mri came up normal. Within the year I started to undergo major body changes- weight gain in chest and stomach, loss of muscle in arms, face, legs. I was really stressed at the time so for awhile I thought stress could be the problem. But then some really bizarre things started happening for instance when I would make a certain smile would make my face twitch like crazy. I would get random surges of energy to parts of my body- surges in my legs and neck, arms. I also started to get really fatigued. I lost the ability to feel an orgasm. I couldn’t exercise because I was fatigued but when I did exercise I wouldn’t sweat at all and my face would get really warm and red that I would have to stop.

I couldn’t really chalk up symptoms to stress anymore. I was referred to an endocrinologist and lots of tests were run. My IGF-1 came back low, a GH stress test was performed and an MRI of pituitary gland. I failed the stress test and was diagnosed growth hormone deficient. MRI results showed a tumor on my pituitary gland. Getting this diagnosis really took a load off my shoulders. I started on the GH treatment 4 months ago and I’m no longer fatigued like I was.

But there still seems to be a neurologic component in all of this. I still can’t sweat, can’t feel orgasm, get the muscle twitches and muscle jerks. I’ve done some research and my problem could be with the Hypothalamus which links the endrocrine and nervous systems. I’d also be curious if there is something wrong with my neurostransmitters and oxytocin levels.

One fear I have now is seeing another neurologist. Prior to my endocrine diagnosis I had two neurologists tell me I should see a psychiatrist. Hearing that was pretty devastating and I avoided doctors all together for the next couple of years.

I told this all to my current GP and he gave me a prescription for requip saying I have restless leg syndrome.

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6 Replies:

  • sounds like cushings, go as your doctor for tests ect
    Eyes, Ears 24 Replies Flag this Response
  • sounds like cushings, go as your doctor for tests ectHiI've been tested extensively for cushings and I don't have it. Growth hormone deficiency mimics cushings. I think the endrocrine problem has been figured out but not the neurologic problems.
    alexburton 48 Replies Flag this Response
  • It's possible you may have had a slight brain injury when you were injured. Did you have a concussion? There is no definitive way to test for this-- it's a matter of observation.
    aquila 1263 Replies Flag this Response
  • It's possible you may have had a slight brain injury when you were injured. Did you have a concussion? There is no definitive way to test for this-- it's a matter of observation.Hi.. no i didnt't have a concussion.if there is something wrong with my hypothalumus and the radiologist missed it. The radioolgist missed the pit tumor the first time also.i'm scared about going back to see another neurologist but i have to .
    alexburton 48 Replies Flag this Response
  • someone mentioned sleep apnea to me and i've really been thinking...cuz i have all the symptoms.what if sleep apnea has prevented my body from healing itself through this injury??
    alexburton 48 Replies Flag this Response
  • well it's getting really bizarre now. Not only have i lost girth in my arms and legs and neck but my actual head is getting smaller. I don't know how to say this other than there must be something that is breaking down my muscle or nervous tissue. The size of my head around the forehead has decreased in size.
    alexburton 48 Replies Flag this Response
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