Discussions By Condition: I cannot get a diagnosis.

It's like looking for a needle in a haystack!

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: kesaiserris
  • September 18, 2009
  • 08:11 PM

Okay forgive the length I tried to get everything in thinking it might help. I have been to a few doctors but financial problems have always made it difficult to pursue anything. I've also had an extremely hard time finding a good doctor and communicating to doctors, so any advice there would help so much. I tend to naturally joke and make light of things, it like an automatic reflex and so naturally I have trouble being taken seriously. Could I be having some neurological problems? Is anyone suffering from anything like me or does anyone have any idea whats going on?

Various types of seizure like episodes basically episodes that look like (Absence/Atypical Absence/Myoclonic/Atonic/Clonic) including auras and strange sense of something in my mouth, my grandmother has epilepsy but I have never been tested.

Intermittent muscle weakness (a little after my daughter was born I had a more serious episode where I couldn't walk but it was brief and for a bit they thought I might have transverse myelitis)

Either hyper or hypo reflexes

Terrible memory, particularly short term (its sucks when trying to get to a doctor for a memory problem and you can't remember you appointment!)

Intermittent heat insensitivity (ex. at a bbq we had to cook our own food people were jumping back and complaining how hot it was and I realized then it just didn't feel hot to me)

I had an episode in adolescence where I woke and found I couldn't turn my head the doctor thought I might become paralyzed I didn't I recovered but I never regained full motion and never found out what happened

I did this needle test (dragging a needle over my skin) to check me neurological and I only know I did not respond appropriately

Very poor attention span I spaced out and jumped out of a moving car! (I have been diagnosed with Severe ADD but they did suggest I might need further neurological testing and so they weren't sure if it might not be that instead)

My sense of pain is strange it can be overly intense or I can fail completely to respond to something obvious (lately its caused me to sleep in a position where I am really injuring myself)

I have been tested for Lupus and MS which I don't have and I do have thyroid problems Hashimotos Throiditis I am still not being medicated for this, though rather than high cholesterol I have low, I've also had and may still have Hypokalemia, I did have but do not now have Anemia (iron), I do have Orthostatic Hypotension (which I am sure accounts for vertigo, dizziness)

My eyes don't track properly if they even try to track, I can't use my eyes together so I use one or the other, usually though my right, together they produce a distorted image I have been told sometimes my pupils do not dilate at the same time, I frequently am missing parts of the image black holes and dots, sometimes colored dots, sometimes strait lines appear to waver, and occasionally I see afterimages, my peripheral vision is shot (the eye doctor said its age, which is a little scary being 28 I hate to think how bad it must be for people in their middle years)

Very strong sense of smell (freakishly strong like I can smell an unopened jar of molasses a few rooms away strong)

Clumsy, poorly coordinated can't even ride a bike

I had never had headache until I was probably 24 and then they have slowly been increasing in both frequency and severity

Increasing difficult following conversations

Constipation (can be severe) or steatorrhea

Gas cramps but frequent inability to pass gas

Cystic breasts and ovaries

Joint pain (knee, hips)

Pinched Nerves


Low muscle tone even if working out regularly

Impulse control (this is getting worse especially in regards to saying inappropriate things)

Dry hair, eyes, skin, etc. sometimes I am so dry my eyelids stick, or I start to gag b/c I can't swallow, the inside of my nose is usually quite dry if its not bloody (I don't have nose bleeds per se b/c it doesn't run out)

Numbness, tingling, poor circulation

Endorphin rushes for no reason (can be intense)

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