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Bluemoon

What to ask your MDS on your first visit

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Hi everyone! I've been reading you all but haven't written since May. 

Tomorrow is my first official visit with my MDS, the specialist who will likely take care of me in the long run from now on. I've already got a huge list of things I'd like to ask, but just in case: what do you guys think a newly diagnosed YOPD should ask on their first visit with the specialist? Those things that maybe you don't think about initially but with time you realize they're something you should've ask from the beginning.

For example, one of my issues is that I suffer from malign neuroleptic syndrome, an acute condition provoked by a temporary inhibition of dopamine on the brain (such as the one caused by any medicine with metoclopramide on it). One of my questions is how this will affect the possibility of being provided with DBS in the future, since in order to perform the operation, L-dopa meds need to be completely removed in a short period of time, and some people develop life-threatening MNS when this happens.

So things like that, important things that you perhaps don't think about asking on your first visit.

Thanks in advance for your help!

 

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Hope your visit went well. I know it's hard but give yourself time to adapt and adjust. 

 

LAD

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Hello, BlueMoon.  You might want to copy your post and paste it in the Ask the Doctor section of the Forum for their comments.

Also, is your MDS available by e-mail?  At Johns Hopkins, the MDS's are available to their patients by e-mail at any time, which has been such a help. I'm not sure if other groups of MDS's are doing this or not, but they very well may be.  There is a lot of collaboration between MDS groups, and it may be something that is standard now.  Not sure, but worth looking in to.

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13 hours ago, LAD said:

Hope your visit went well. I know it's hard but give yourself time to adapt and adjust. 

 

LAD

LAD, you remembered – thanks for that :)

It went well, I felt very understood and taken care of. I won't start any medication yet since I still want to have kids. I am well emotionally, I asked a thousand questions and my appointment went on for two hours. So it's all good! x

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9 hours ago, Linda Garren said:

Hello, BlueMoon.  You might want to copy your post and paste it in the Ask the Doctor section of the Forum for their comments.

Also, is your MDS available by e-mail?  At Johns Hopkins, the MDS's are available to their patients by e-mail at any time, which has been such a help. I'm not sure if other groups of MDS's are doing this or not, but they very well may be.  There is a lot of collaboration between MDS groups, and it may be something that is standard now.  Not sure, but worth looking in to.

Hi Linda, thanks for your input. It is indeed a good idea to post this in the Ask the Doctor section, will do that.

I'm not sure if my MDS is available by email. They did give me a kind of "direct line" to my doctor's team. I can call at any time if I have an issue. Still don't know much about the dynamics of the group since it was my first appointment. But it looked like they were very dedicated to the patients.

It was a bit shocking since there was no one my age. And I got to see what my future with PD will look like through other patients in the waiting room. But apart from that, all good :)

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That's excellent that there is a team available to help you!  I'd encourage you to contact them about anything regarding questions you have.  What they do not know, they will take to another level to find the answers.  Hopkins has a similar set-up in addition to the MDS's being able to be contacted by e-mail directly. Sounds like you are in a good place.

I know what you mean about seeing how Parkinson's has affected other people. But just try to keep in mind that everyone experiences PD in their own way.  And many of those you saw may not have had the advantages we have of so much more information being available, as well as treatments and recommendations for dealing with it.     

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On 6/17/2017 at 8:48 PM, Linda Garren said:

Also, they may well be able to tell you about local and on-line young-onset-specific PD support groups.

Yes, you're right, I didn't think about it. As far as I know, there is a local PD Association, but I'm pretty sure it's for everyone, not specific for YOPD. Will ask. Thanks Linda!

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