Seeking a 2nd opinion Movement Disorder

[mleec]

I am 62 years old and I was diagnosed in 2017, waited a year before taking meds, started with Sinemet. Increased dose to 1.5 tablets 3x per day. Then went to 4x per day. This past June off time was more than on. Increased to 2 tablets 4x per day, plus a dose of CR 50/200 before bed. Still not carrying me more than 3 hours. I wanted to try Rytary, but Movement Disorder specialist put me on amantadine instead. First day tried the 3 doses at 2.5ml and was nauseaous. The next couple of days tried 1 dose, it seemed to help, after a couple of days went to 2x per day. Then tried 5ml 2x per day. Now I am nauseaous and have a headache. I am eventually supposed to go up to 10ml 3x per day.

Anyway, I was satisfied with my physician to a point, but I don't find him to be very progressive. After watching a webinar about the variety of medications that are offered today I feel that I should be more fluid in movement. I do exercise, eat right and try to socialize.

I am in Rhode Island and was hoping someone would have a recommendation for a Movement Disorder specialist in Boston? Thank you for any suggestions.

[Hikoi]

I am a little confused. Are you taking an Amantadine syrup? I only know it in a capsule. What strength do you take?

[mleec in reply to Hikoi]

It’s a syrup. 50mg per 5 ml. Very inconvenient.

[SELFMeder]

Would you kindly send us the video?

I’m 8 years in. Your approach seems very reasonable.

I exercise most days. Take two Sinemet 25/100 per day and a higher dose to sleep near normal for an old guy. Also supplements to ward off insomnia, muscle spasms and constipation.

It’s challenging but doable. Lead pretty normal social life and just published my 13th book.

Understanding spouse and wide set of friends who are aware of my condition.

Had to give up my active corporate transformation career. Now I let my books do the walking. Play more of an Obi-wan Kenobi role on large scale corporate transformation projects. Rather than go viral I’ve gone virtual!

Hope some of this is helpful. Keep up the good fight!

Self Meder

[Rupa88 in reply to SELFMeder]

Glad you are doing wellHow old are you

[enjoy2013]

any COMT inhibitor (entacapone? Opicapone)? IMAO (selegiline, rasagiline)?

[Sleeplessparki]

Have you tried Dr Joseph Friedman? He is outstanding

[Sleeplessparki in reply to Sleeplessparki]

Sorry Dr Friedman is in RI

[Sleeplessparki in reply to Sleeplessparki]

I’m 64 years old and was diagnosed in 2010. I began seeing Dr Friedman around that time and had a great relationship with him. I had successful DBS surgery in 2018 at Brigham and Womens hospital and because of that, I switched movement disorder doctors to Brigham and womens and now see Dr Jordan Paulson who I highly recommend.

[jackedmonston]

I have seen no less than four movement disorder specialists in Boston. I like the one I am with now, Marie St Hilllaire at BU Medical Center.I

[stocktiki]

My doctor got annoyed when I told him I took 2 c/l 25/100 a day, down from the 3 he prescribed. Said less than 3 doesn't do anything for you.

[Bythejerseyborder in reply to stocktiki]

I have a doctor like that. She's very condescending. I'm currently looking for someone new