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

Reply Flag this Discussion

6 Replies:

  • inner ear: I am wondring if you may have an inner ear problem like vertigo or mal de debarquement syndrome or another type of sever inner ear disturbance? Perhaps a very, very good ear, nose throat doctor may help. Balance: I am also wondering about orthostatic intollerance. they have tilt-table test and other test to try this one out. Vision: I am also wondering about a vision condition I read about (can't remember the name) and not quite the exact symptoms but it is helped with glasses that have special prisims. Some kind of epilepsy?: Also crossed my mind that some folks have trouble with computer screen and florescent lights and they are actually having little seisures from these. If you quit TV and computer for a couple of weeks does it improve? Have you tried this?
    Joan5555 316 Replies Flag this Response
  • You might want to make sure you don't have Hashimoto's Encephalopathy. Consider asking to have your thyroid ANTIBODIES (not just hormones) checked. Most doctors, including neurologists have never heard of it. Doctors usually don't check antibodies unless hormones are off first, but in HE, hormones are often normal.Sorry you are having these symptoms and no answers yet.Best Wishes.
    Anonymous 42789 Replies Flag this Response
  • Thank you for answering. I have had several tests down 20 years ago including vertigo and a number of other things. However, you have given me some information that i didn't even think of. I will look into it and see if i can get a doctor to run some additional tests.Thank you again
    Jade Summer 4 Replies Flag this Response
  • Don't know if i can help any but possibly could be aura migranes, there are many different types my aunt has the aura, my mother has the rare bisilar and my uncle just has normal but some of them can cause some of what your describing.
    foxylovesred 12 Replies Flag this Response
  • Thank you to all that has helped. After researching all of the disorders that were presented, I believe that the orthostatic intolerance is exactly what my problem feels like. Again, thank you all so much. It is tough feeling like the doctors may be right and I was just crazy, I'm happy to know that it is actually a physical problem.Thank you
    Jade Summer 4 Replies Flag this Response
  • I too think you may have orthostatic intollerance going on and should have a tilt table test done. (but i think your issue may be more than just that.. but that could be a good part of the issue). Im wondering what your sleep is like? do you sleep normally? Im asking that question as im wondering if you could have chronic fatigue syndrome as many with orthostatic intollerance have CFS. " My legs will not work well or at all. " is this due to like a coordination issue going on with your legs? or they just dont really want to like move for you? I have CFS and sometimes my legs dont work well. They can be weak or sometimes just very hard to move and coordinate to the point where at times they will make me trip.. or one will get suddenly left behind (leg drag). I will esp have issues if im trying to go uphill The biggest mystery is the not being able to walk part after i am playing on the computer or TV. In chronic fatigue syndrome.. mental concentration/effort can affect ones whole body.. and cause then issues with walking etc if one has "mentally" (or even emotionally) over exerted while concentrating. I cant say if you may have CFS or not, as I dont know enough about your symptoms from the info given. (If you have CFS you will have more symptoms then just those you've listed.. for example.. headaches, body pain, sore throats, fevers, bowel issues, food intollerances and sensitivities... may be happening too).
    taniaaust1 2267 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.