Discussions By Condition: I cannot get a diagnosis.

If not dementia then what?

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: stedman
  • March 8, 2007
  • 06:23 PM

Last may my husband was admitted to hospital with a suspected stroke. After several days and much degeneration he was diagnosed with Miller Fisher Syndrome and given immuno globulin. We were told to wait 6 months for recovery. In november when he next saw the neurologist, the doctor said no it is not m/f but a degenerative dementia for which there is no cure. y husband then spent 3 weeks in hospital undergoing more tests. The list of possible causes have been; CJD, Ataxia, fronto teporal dementia, prions, whipples and others I have forgotten. He has been in hospital now for 5 weeks and we are still no nearer a diagnosis.
He cannot speak properly, cannot walk, his movements are stiff and uncoordinated, he has double vision, a persistant cough that seems linked to the swallowing mechanism, he finds it difficault to chew food without biting his mouth, hecannot do anything without assistance, even standing to pee takes 2 people to hold him up, he has no balance, he is agressive and violent towards me but not hospital staff. His memory is generally very good and he consistenly passes the dementia tests. His psychologist has said that he does not have dementia but the neurologist says that he has. They now think it could be the cerebellum or broca's regions of the brain that are affected. It is now nearly 12 months and he is getting frailer and less able to communicate every day.

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4 Replies:

  • I can synpathize with you because my husband experienced the same thing over a period of time. Dr's also said demintia but was not sure. They said it is Basil Gangular degenerative disease. Ask them to also run tests for a type of dystonia. I hope things do better for you both. But never give up a friend Judy
    Anonymous 42789 Replies Flag this Response
  • Have they checked for Picks disease? My son's FIL was diagosed with this rare disease. It is somewhat like Alzheimers but way worse and faster acting too.
    Anonymous 42789 Replies Flag this Response
  • Have they tested for Parkinson's? Just a thought. I would suggest in addition to the Western treatment that you find a qualified acupuncturist to help with your father. I worked at a Rehab hospital while in graduate school studying acupuncture, and we had very good success on post stroke patients. Do to his nature and inability to move this may be hard to do. Perhaps you could research acupressure and try this on him? There was a recent study done that showed acupressure was very helpful in calming patients with dementia and/or alzheimer's. I wish I could offer you more help, and wish you all the best.DOM
    acuann 3080 Replies Flag this Response
  • Have they done an MRI that included the brain stem? Have they shown any brain lesions? Brain stem lesions?Picks Disease doesn't act that fast, but it does affect the brain stem. Perhaps there is something going on that is damaging the brain stem very quickly? What are his blood tests showing? Any infection? Any chemical imbalances?It all sounds very bad, Stedman. I wish you and your husband the best of luck. Shula
    Anonymous 42789 Replies Flag this Response
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