Discussions By Condition: I cannot get a diagnosis.

Please Help Living with a disability for 20 years!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Jade Summer
  • March 15, 2008
  • 04:46 AM


Thank you in advance for reading this post. I am hoping someone can help. I have been living with a debilitating condition for 20 years.

This problem began when I was 13 years old. I am now 33. It began slowly and gradually got worse. Until I was house bound for 15 years. I finally received a wheelchair about 4 years ago and been able to get out of the house. I am now pregnant and I have recently been obsessed to find out what is wrong with me.

I went to over 12 doctors between the ages of 13 and 18. All of them told me there was nothing wrong with me. This caused me not to see a doctor for around 15 years. My OBGYN suggested to give it another shot, so I had an appointment with a neurologist. He spent 15 minutes with me and again said he could not find anything wrong with me. I am at my wits end!! Any help would be widely appreciated.

This is what I experience:

Dizziness when: flashing lights and movement or walking in general.

When I stare with my eyes at something for a long time and intensely, IE: computer screen, TV or moving in a car, when I try to stand I can not walk. My legs will not work well or at all. This only happens sometimes. Sometimes I need to hold myself up with furniture or walls so I can make it to the phone or the bathroom.

When I am more tired, the condition becomes worse.

I cant not walk around my home without having something near where i can hold on to in case i lose my balance

It is frustrating not knowing why this is happening. The biggest mystery is the not being able to walk part after i am playing on the computer or TV. Im tired of doctors that don't care enough or honestly do not know what is wrong. I am on my state's health plan and its hard to find someone that can diagnose the problem. Any help would be great.

Thank you again

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