A Mystery
 

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!

Hi
 

Barbara,

My heart goes out to you. We are not doctors as you know, but if there is one thing I am learning, it's that there are so many possible reactions to environment genetically, that the conditions are multiplying and they just don't know what is wrong. It's like the universe - so many interactions and glitches possible.

That wasn't very helpful; it sounds like you are doing the right thing - just keep searching, but it may take some time.

You're welcome here.
Paula

Barbara, you said, "The head of Neurology says there is clearly something at work, other than the Parkinson, bu they can't find out what."

Would you share where the "head of neurology" is located. Is this doctor in a Movement Disorder center, one that specializes in movement disorders such as PD and MS?

Maybe if you can share this information folks on this board can give you some alternative diagnostic locations to check out.

What were his "off meds" symptoms when he was diagnosed with PD?
What are his symtoms now?
I don't ask these two questions in order to provide diagnostic guidance...I may have had PD for almost two decades, but I am NOT a doctor...but to help us understand and provide the diagnostic location guidance as cited above.

As Paula said, you are very welcome here...ask all the questions you need and want to ask...someone will reply if they can help.

:hug:

Barbara
 

Since he has baffled the neurologists, I would do everything in my power to see the best available neuroendocrineologist and an immunologist and a gastroenterologist too. But you need the latter two to be atypical because most would shrug and say "Not my field."

PD has aspects of all the above so it is sensible to look there. The endocrine system is maddening and can account for most symptoms of PD. And problems with nutrient absorption in the GI tract are just as bad. Heck, throw in a rheumatologist, too. Inflammation in the nervous system should be looked at.

If it were me, I would be wanting every lab test available with a focus on minerals and vitamins (especially the B's and the electrolytes) in the system. It is possible to eat a great diet and take pills by the handful and still be short on something vital because you aren't able to take it up or you are missing an enzyme or something. Lower limb problems are particularly suspect when nothing else accounts for it.

Good luck.

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