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Topic Went to Movement Disorder Clinic Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2010.01.06 18:01
Well, we went to the movement disorder clinic in charleston today and got to see the head doc. First we saw a resident who did an intake and did some really neat tests for cognitive issues. None that the other neuro ever did. They checked out his MRI, did several blood pressure readings, made him walk ya know, the whole nine yards, a really intense check out in my book.
I'm not sure if it was good news or bad news but Doc says he has Parkinson's Plus or MSA or Shy-Draegar Syndrome. It seems that he feels he does not have parkinson's as it is. Due to his history with the brain injury, shrinkage of the brain from that injury,certain factors, like his tremors are not real pronounced, his right side is weaker and less coordinated than the left, and he is right handed, some other cognitive issues leads him to this. Because of his history he feels that it makes diagnosis "muddy". He sees, as he put it, subtle PD symptoms but with everything else he feels MSA, is what he has. He wants to spread out his Requip dosage to 4x a day, add aricept, and good old melatonin for sleep.

I hope ya'll don't mind if i check in once in a while to see how ya'll are doing. All the info i received from here will still help me with what i have to face. From what i read on-line at Mayo, progression is faster 6-9 years, but maybe as long as 15, I wondered why he seemed to progress so fast, even though i know all cases are different.
We'll be back at the clinic in 6 months and wants us to find a PCP locally to help with scripts and any on/off issues with the meds.....

Love ya all and thanx for all the info, i know it will help. I'll check in from time to time and hope all goes well for all of you........Penny

By LOHENGR1N On 2010.01.06 19:20
Penny, Please don't feel you have to leave. Parkinson's plus, Multisystem Atrophy and Shy-Drager Syndrome all still require You as caregiver! Many of the hints and helps learned by others here will still come in handy, plus if you are experiencing a problem you still have Us all to lean on. We'll still be able to help you problem solve. (His med's may change or dosage change to address developments not encountered with "Typical, Normal" Idiopathic Parkinson's Disease if there even is such a beast! Which We know there isn't!)

Don't think you have to or should leave the forum I'm sure I speak for mostly all of Us when saying don't go, please stay with Us. Sincerely Al.

By anidaholady On 2010.01.06 21:09
I'll echo Al in saying you should stick around - for all the reasons he gave. Your presence here is valuable.

By annwood On 2010.01.06 21:33
Don't you dare leave us! We need you and you are still a caregiver. Your husband still has PD like issues. I so enjoy your posts.

By mylove On 2010.01.06 21:33
Penny, you're bright, funny and a wonderful person. I for one would miss your input very much if you were gone. I know that you have a lot on your plate right now, but please stick with us. Maybe you can offer us more insight along this road than anyone else could, since you have a unique situation. At the very least you can help us to understand one more side of this multifaceted disorder. Don't downplay how much you give back to the group; not the least of which is your wonderful sense of humor.

Have faith, hang in there, and take from the group what you can. I'm sure I'm not alone in saying we are here for you, no matter what the final technical diagnosis is.

By hubb On 2010.01.06 22:34
You're lucky you found a dr. to diagnose PSP - my sister in law was diagnosed after 3 years of being told she had PD but they had a GP who persisted and found a specialist in Dallas with Baylor Medical who correctly diagnosed her - he had been affiliated with John Hopkins and was an expert in this field -- there are not too many neurologists who know anything about this disease at all - they had my sister in law on synamet and kept increasing dosage as it didn't help her at all, and when she was correctly diagnosed, they immediately took her off the synamet - can't remember what she took, but it helped her for a couple of years. This is a very misunderstood and misdiagnosed disease and there is a foundation which my brother belongs to and I'll find out the name of it and get it to you as they may be of some help to you...just like this forum, the more you read for yourself, the better prepared you are to deal with whatever comes up. So please don't leave us as we are all interested in all phases of this terrible disease and most times help each other more than the doctors help us.

By karolinakitty On 2010.01.07 06:16
Thanx Al and everybody else ... I will stick around.....
I did alot more reading last night and lots more research. WHen the Doc said P-Plus I guess i mis-understood at first. When i googled P-Plus i came across the MSA and naturally assumed that was it but as i got into it deeper last night i realized something the doc had said about things. He said he was under the umbrella of Pplus and NOW i understand why. With all the testing they did yesterday and the doc's comments about "muddy" it all makes sense. At this point he can't finger just one of the 4 diseases. He has symptoms, of all 4 but not all of just one.
I think the biggest and maybe wierdest thing is that he has no psychosis of any of these at this point. No hallucinations, no acting out, no aggressive behaviors none of that stuff.
I guess ya'll are right about the helping out since these echo PD but PD drugs, like Sinemet , have no benefit for them. In fact Sinemet can cause adverse effects for most with Pplus diseases.
We are so pleased with this doc and could tell from the get go this was going to be a great place to go. Just even being with the resident, and having him take the time to do all those different tests was amazing to us, since the other doc just wasn't inquiring enough.
As things go and i come across "new" stuff i'll let ya'll know.......

By LOHENGR1N On 2010.01.07 19:08
Good decision, glad You reconsidered :)

By lurkingforacure On 2010.01.07 19:57
Thank you for sticking around. I think many PDers ultimately are dx'd with some pd plus but you don't always see it right away, it almost seems like as we go along, things don't add up and then the doc figures it out. I have heard of this happening with MSA as well.

It's all so scary and muddy, as your doc said. That is actually a great word for it, since most docs, even neuros, dont' seem to be too clear at all in their understanding of this disease, if that's even possible.

By curveball On 2010.01.10 13:13
Best of everything to you and take good care.

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