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Topic New diagnosis Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2012.11.17 13:20
For those who have known us the last four years..we have a new diagnosis on record... we are so excited about it

Jim is no longer diagnosed with LBD... after further review and a deeper neuropsych evaluation our neuro has scratched that and gave a pure diagnosis of A-typical Parkinson's.

They are assuming that because Jim had issues with PTSD that the dementia originally diagnosed so severe was due to the PTSD and the progression he had incurred with the PD...the body can make the mind do things and put the dementia in the forefront they said IF there have been issues in the past.

They also believe that his rapid progression was a result of the Requip he was taking. While Requip/Mirapex are two drugs very common in PD, they are recently showing about 40% of persons have a very adverse reaction to it. We know the most common ICD's associated with them but they are now realizing the other incidents of progression, autonomic dis-function and other reactions and some neuros are actually calling it an allergy to the drug....

With the regiment of Sinemet Jim is on it seems to work well... and while his PD symptoms are mostly typical he still has a few they aren't sure

We will be going to the NIH in Bethesda for an evaluation for any or all of the drug trials they have going for PD.

Our doc is curiously awaiting their evaluation to see what they think also...

If anyone is interested in perhaps getting into these trials I have all the info for important thing i should mention is currently the NIH pays for transportation to Bethesda,( within 500 miles they give gas allowance, otherwise they pay for airline) hotel stay and food expense. and YES they pay for the caregiver too!!!!! It is a basic 3 day trip..first day is your journey, second day evaluations and possible trials...if they want you in a trial that day..they extend your trip if YOU can otherwise they will reschedule the trial..and again pay for YOU to get there....the third day would be your trip home....

By lurkingforacure On 2012.11.18 08:43
Yay! Who knew one could be excited about a PD dx? lol

By carman96 On 2012.11.19 00:25
That is a great. I'm glad to hear it. Our neuro thought my hubby had Multiple System Atrophy so I found a new Neuro. She thinks it is just PD.
It's a relief for sure.

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