[Horsegoer]

Below was a great response from conductor71 about my dad. I just called him and he said the meds don't make his symptoms any better or worse. He feels the same all the time. About the four signs he said he only has the tremors and he doctors agreed with this but said he had parkinsons. He said he has been to four neurologists and they made him go through test and they all said he has PD. :confused


Minor detail, huh? The brain fog goes away when our medication kicks in. A couple other things I meant to ask. Does your dad feel like this all the time? Or just in between doses of Sinemet?

Also, if you don't mind sharing...what are his primary physical or "motor" symptoms? For PD diagnosis the doctor must observe at least two of four cardinal signs: tremor, rigidity, slowed movement, and postural instability.
Do you notice a difference in how he moves in relation to taking his meds? If you see none back to neurologist.

Easiest thing though is to ask your dad. We have what we call an "on" and "off" with meds. When we are on, no clear thinking, move normally for most part and some of us show no symptoms. When "off" the brain fog takes over and we show our symptoms. Should be easy to observe.

[Horsegoer]

Oh, and he went to a movement disorder specialist at USF in florida

[Horsegoer]

Anyone?? Thanks

[Conductor71]

Originally Posted by Horsegoer

Anyone?? Thanks

Well, looks like you are stuck with me. From a patient's perspective one of the most frustrating things is lack of any reliable biochemical diagnostic measurement for this disorder; hence, our standard is clinical observation. There is a rather high error rate (15-30%). PD looks like many other things in its early stages.

a)If this were my dad; knowing what I do now, I would scrap the three neuro diagnoses and go with the one Movement Disorder Specialist. However, I would request copies of your father's medical records from all four (only in sense it might help inform you of the common signs they see).

b) Schedule an appointment for your dad while you are visiting. Doctors can either speak too much or not give you enough info. Plus, as patients we can shut down and sometimes hear only what we want to, or otherwise "filter" the facts.

c) If you cannot do this (b) right away, call and tell office your concern (you are not comfortable with his diagnosis based on his lack of response to levodopa). Ask pointedly what leads doctor to this diagnosis (look for cardinal symptoms) and what is next step given meds are not working. Hopefully you find some answers and relief for your dad somewhere at this point. If you still don't think this sounds right....


d)Make an appointment for a second opinion with an MDS at a place that is centered on brain disorders. It doesn't need the Mayo Clinic, but you might need to drive a few hours one way. These centers usually offer sophisticated brain scans that may further fine tune a diagnosis.

Note: There must be at least two of the four cardinal signs present for a PD diagnosis, so your dad has to be showing symptoms in some way. Keep in mind that four doctors did see two sign They may be subtle but they are there. You might be able to note some just by watching your dad go about his day. Does he move slowly or gingerly? When he walks, does he ever lean to or favor one side? When walking, does have a natural arm swing or does one arm move stiffly? Does one foot ever lag behind other when walking?

Please continue to update us....

Laura

[Conductor71]

Just re-read your first post. Tremor is a symptom found in many other disorders, not all primarily neurological...They must have at least one other sign.

A more hidden symptom we do not always notice right away is rigidity. Or your dad may just think his stiff leg or or shoulder is aging. Doctors look for something we don't see or feel called cogwheel rigidity.

Keep in mind that levodopa does not help tremor for some patients. It has bee n written that neurologists commonly misdiagnose (primary) Dystonia as PD. I think that you might want to read up on Dystonia as a possibility as well.

Laura

[Horsegoer]

Originally Posted by Horsegoer

Below was a great response from conductor71 about my dad. I just called him and he said the meds don't make his symptoms any better or worse. He feels the same all the time. About the four signs he said he only has the tremors and he doctors agreed with this but said he had parkinsons. He said he has been to four neurologists and they made him go through test and they all said he has PD. :confused


Minor detail, huh? The brain fog goes away when our medication kicks in. A couple other things I meant to ask. Does your dad feel like this all the time? Or just in between doses of Sinemet?

Also, if you don't mind sharing...what are his primary physical or "motor" symptoms? For PD diagnosis the doctor must observe at least two of four cardinal signs: tremor, rigidity, slowed movement, and postural instability.
Do you notice a difference in how he moves in relation to taking his meds? If you see none back to neurologist.

Easiest thing though is to ask your dad. We have what we call an "on" and "off" with meds. When we are on, no clear thinking, move normally for most part and some of us show no symptoms. When "off" the brain fog takes over and we show our symptoms. Should be easy to observe.

He did see a movement specialist at USF and they said Parkinson's .