Discussions By Condition: Medical Stories

undiagnosed for over three years-now probably terminal

Posted In: Medical Stories 1 Replies
  • Posted By: countrycat
  • August 12, 2008
  • 11:38 AM

It started with sleep problems, horrible nightmares in 2004. A year later I still had the nightmares but it escallated to me throwing myself out of bed, and terrible thrashing and screaming every night.
Next symptom was dizziness and loss of balance plus a tremor in my right arm and hand. My Internal med doctor was treating symptoms, but the cause was unknown. I was given several psychiatric drugs to try but couldnt take them.
I had lorazipam and lunesta for sleep but it gives me hallucinations.
One nerologist said it was anxiery and depession and gave me stronger lorazipam (I refused it as it makes me a zombie) and cymbalta. ( I also have fibro myalgia ) He was TOTALLY WRONG.
Now into the third year I am falliing all the time, off balance, dizzy, un-coordinated and can't write. I don't dare drive either. If I shop I have to hold onto a buggy or I walk every which way. I have no control of my limbs. My speach is also affected so I can't speak clearly some of the time.
I recently got a new internist to see me and he is performing every test he can think of. I am totally sick of the whole business, I can't take care of my husband, my precious cats or my home properly.
The new neurologist has given me a tentative diagnosis of Cortical Basal Ganglionic Degeneration which is very rare and has no cure. It is a degenerative brain disorder that is similar to Parkinson's . The doctor who specializes in this is in Tampa at USF Moverment Clinic. Not much research is done because it is so rare so they only do trials using medications that are for other diseases. So far no medication has slowed down the progress. Anyway I am at least three years into the disease and it takes 6-8 years to fully disable. I can't tell you how upsetting this is. It is terminal.
I found out today that I have blood in the urine and have to see an oncology Uroloist. I also have to get a sleep study done........I hope that happpens soon.
I wouldn't be surprised if years of medications to treat symptoms without knowing the cause is responsible for all of this.
After I finish all this testing thist is my next step. A great doctor named Purlmutter is here in Venice , Florida. He is a Neurologist who practices traditional and natural medicine. He will mostly be out of pocket as insurance companies are so closed minded about natural treatments. Since all of the traditional tests are already done, he will not have to repeat all of the testing
The most precious thing we have is good health. Money, power do not mean a thing without it.

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    Monsterlove 2921 Replies
    • August 12, 2008
    • 06:42 PM
    • 0
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