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Originally Posted by Barbara H. Clark
I'm looking for suggestions.
My husband was diagnosed with Parkinson Disease in 2005, however his symptons are not typical. The neurologists are baffled.(He's seen 4) For two years he's been tested, scanned. MRI'ed etc. and tried on a host of medications. No one has a clue what accounts for his condition.
He has no tremor, no pain, no dementia. He has extreme weakness and constant fatique which is not helped with bed rest. The problem is not muscular, his musces are strong. Yet he can bafely support his own weight even with help of a walker. (He weighs 140 and is 5'6') He is currently on sinemet and though the result is less than expected, his symptons do worsen when taken off the drug. Other druge tried have not had favorable results. The head of Neurology says there is clearly something at work, other than the Parkinson, bu they can't find out what. Any suggestions on where to go from here? I'm nearly at my wts end!
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Hi Barbara Clark,
Perhaps you could ask the neurologist if the symptoms are related to dopa-responsive dystonia. Or about the possibility of Ataxia, which there is a genetic test available to rule it out. These days most doctors are not too big on diagnosing an illness but put emphasis on treating the symptoms. Neurology is in its infancy and tons of new information is being released every day. The patient is anxious to have a diagnosis so he feels some progress is being made. What is hard for the patient to understand is neurology is such a new science, that even with a diagnosis, the method of treatment may not change. Lab Testing is expensive and with the emphasis on holding down medical costs, doctors are not prone to risking requesting a test just to put a name that may or may not be right and likely will not change treatment.
Here we start to get into the Ethic of the importance of the patient need to know to relieve stress and the need to suppress medical costs. I would recommend you become the most knowledgeable person about your husband's illness. Don't stop asking questions and asking for help. Good luck.
Vicky