JUST FOUND A POST ABOUT PSP HERE IN THE US.

[Auddonz]

clinicaltrials.gov/ct2/show.... Sent them 2 emails to see if they are still doing them. They are working with Merck here. The number I copied is here in Fl but they are being in other states as well.

Auddonz (aka Audrey)

[psplife]

Going to check out your link. Thanks Audrey.

[Auddonz in reply to psplife]

They called me today. The study here in Fl was closed but they will be doing another one shortly. Let me know if you got through to them in your state.

Audrey

[mthteach]

The Birmingham study started about 2 months ago. We were suppose to be in that study before we were told by the study doctor that my husband might have MSA. That took us out of the study. He does not see the MSA doctor until Sept. which I think is a long time. 

We have taken him off the sentiment. Which I think he is doing better without it. That is one of the things they said MSA people do when they are taken off the drug. We are so unsure now.

[Auddonz in reply to mthteach]

mthteach. What is MSA? I sometimes wonder if my hubby was diagnosed correctly but he getting weaker and his memory is declining. Starting to go out of the house without me, afraid he will wander away. Is the study in Birmingham the first or the second The one here in Oct is the second and I have my issues about it. Wonder if any of the Dtr really know what they are doing.

That is a long time to see the other Dtr. Don't blame you for being unsure. My hubby is on carbadopa/levadopa, sorry spelled wrong, but I think his condition is getting worse which I was told would happen after a while and the med would stop working for him. Additionally,  from what I have read it is not supposed to work for patients with PSP but it did for him for about a year. Very unsure here as well and confused since I do a lot of research on line.

[mthteach in reply to Auddonz]

Auddonz, MSA is Multi symptom Atrophy. From what I have read on the computer it mimics PSP. There are a few differences. It said on the computer that MSA patients are usually diagnosed with PSP at first. It is best to read about it on the computer.

 I thought the same thing about the doctors when my husband was first diagnosed. That is why I took my husband to Mayo Clinic in Jacksonville, Fla. when he was diagnosed. He now sees a doctor in Birmingham which is 4 hours from where we live. 

My husband was in a study for PSP in Birmingham. I learn some from that. The study in Birmingham is in phase 1 during the first of the year. They might be taking new PSP patients into the study in Oct., but it will be for the phase 2. The study was to last 2 years.

My husband is going down fast also. Every evening if he is not in bed about 6-7 pm, he starts to fall over,out of chair. He can barely stand during the evenings. He is in a wheel chair, but I try my best to get him to walk some during the day. 

He has not had the levadopa for about 3 months. 

[Auddonz in reply to mthteach]

mthteach, My husband is starting to go down hill rather suddenly. Do you think that being on the levadopa is making a difference? Don't know why I didn't see your post until today. They want to see him at the movement and disorder center in Gainesville but they are also doing it here at the Mayo in Jacksonville about 2 to 3 hours from us. With his age and other health issues I don't know if they will consider him for it. This study in Oct is the 2nd phase, from what I was told. Who stopped the levadopa?

Audrey (aka Auddonz)

[mthteach in reply to Auddonz]

The research doctor in Birmingham. We were set to start phase 1 of that study up there in March. The doctor said because my husband did not have the upward gaze by now in his disease, he suspected that Larry might have MSA. His appointment with the MSA doctor is not until September. I do not see a huge difference without the levadopa. My husband was never on it in high doses. 

He has had a few spells where he is talking out of his head. All last night and half of the day today. It was not until tonight that he popped out of it. 

I do not know if they would let my husband into the studies now. His walking has gotten worse. We traveled to Winter Haven in January. He fell in the bathroom at the rest stop in Lake City. Ever since then he has been mostly in a wheel chair. 

I did love the professionalism of the doctors in Jacksonville Mayo Clinic. They were great. 

There is another lady on here that traveled to Gainesville Movement Disorder clinic last week. She might be able to tell you their opinion of it. She took her sister who has PSP. They are from Huntsville, Al.