This Is MS Multiple Sclerosis Knowledge & Support Community

Hello Nigel.

Well done, and as always the reward is so close to follow, if you get my drift!

You have done so much for us all, and then the ones close to you see the little major things!

Nigel

Interesting post Blossom. Thanks for the info.

"The beast" as her parents call her is awake and on her belly on the floor attempting to roll and crawl but it looks more like power yoga. She's not getting anymore banana's from me. She has a beautiful round bubble head. Craniopathy and cranial molding maneuvers are perfect for babies.

Nigel,
Is there any chance you could get to New York for one of the upright MRI and cine blood and CSF flow studies? You would be a good case to study.

I am keen, purely because I have the belief that my spine is the center of my issues so to say.
What would it require time wise for the testing? Is it a one day thing or over longer period of time? Is there a window of time when it would be possible?
Thanks Dr

Patients are given a day and time slots. It will take several hours of your time. I can get you into one being done on Friday, July 27, if you can make it. If not, then maybe one of the next studies. You would be a good candidate.

Thanks for the quick reply. I'll do some homework tomorrow and see what I can do.
Regards Nigel

It's been a busy day scheduling MS, Parkinson's and Chiari cases for the next upright MRI and cine blood and CSF flow studies. It's a beautiful summer day. I think I will take a break and head down to the river for a swim. I like swimming upstream. It's better than an endless pool.

uprightdoc wrote:It's been a busy day scheduling MS, Parkinson's and Chiari cases for the next upright MRI and cine blood and CSF flow studies. It's a beautiful summer day. I think I will take a break and head down to the river for a swim. I like swimming upstream. It's better than an endless pool.

If it's the Hudson you are speaking of, my laymans recommendation is a level 5 haz-mat suit followed by a Silkwood-esque scrubdown post swim.

tilt

Hello Tiltawhirl,
I guess it depends on which neck of the woods you come from. I certainly wouldn't want to swim downstream from Anthony's nose but the river by me is very clear and clean. It's great for swimming and tubing.

Hi Dr F I have sent a PM to ask some questions and up date you with my quest for wings.

I put this on Dr. S's thread and will put it here to see what response I get.
Quote,
"Question for Dr. S and all watchers,

** Do people with RRMS also have a RR symptom experience with PTA?

** Do people who have only had progression MS ever experience a relapse of symptoms after PTA?

** Question for Dr. S are you interested in doing a inspection with IVUS and not ballooning, purely to map any all veins for me?

Thought fodder,
Nigel"

I am thinking I would volunteer the Dr. Rosa Opportunity and also have an "inspection only" with IVUS with Dr. S.
I don't want to have any angio until there is more understanding about the whole MS/CCSVI picture and the PTA option or approach has some answers as to what is actually happening to the breach of the BBB after PTA.
Chicken and Egg, would the BBB have to be sealed before PTA could be a lasting option?

Regards,
Nigel

Hi Dr F,
would a person with Chiari who has had decompression surgery and a first try at a cyst on the Thoracic now deemed as Arachnoiditis be of interest to the Dr Rosa study?
I happen to now of one such person, who may be available on the same flight as me!
Regards,
Nigel

Hi Nigel,
My swim was excellent. My swimming hole is serene and beautiful. It clears my head and revitalizes my spirit.

There will be other upright MRI studies. They are being done about every one to two months. If further funding is provided by the Fox Foundation, there will be even more. If you can make this one let me know as soon as possible. If not I will get you in the next one and give you more warning about the dates. It will probably be close to September. If it is Neava you are referring to, she would be a excellent case to include in the study.

For those of you unfamiliar with the Hudson River the links below show its origin in the Adirondack Mountains as well as the infamous Anthony's Nose across from Dunderberg mountain (Jones point) by Bear Mountain just south of Storm King Mountain and West Point. The river cuts through the Appalachain Mountains in the highlands by Anthony's Nose and forms a fiord. New York City is much further south. I have kayacked many parts of the Hudson.

http://www.dec.ny.gov/pubs/57573.html
http://en.wikipedia.org/wiki/Anthony's_ ... stchester)
http://en.wikipedia.org/wiki/Anthony's_ ... stchester)

Hi Nigel,
My swim was excellent. My swimming hole is serene and beautiful. It clears my head and revitalizes my spirit.

There will be other upright MRI studies. They are being done about every one to two months. If further funding is provided by the Fox Foundation, there will be even more. If you can make this one let me know as soon as possible. If not I will get you in the next one and give you more warning about the dates. It will probably be close to September. If it is Neava you are referring to, she would be a excellent case to include in the study.

For those of you unfamiliar with the Hudson River the links below show its origin in the Adirondack Mountains as well as the infamous Anthony's Nose across from Dunderberg mountain (Jones point) by Bear Mountain just south of Storm King Mountain and West Point. The river cuts through the Appalachain Mountains in the highlands by Anthony's Nose and forms a fjord. New York City is much further south. I have kayacked many parts of the Hudson.

http://www.dec.ny.gov/pubs/57573.html
http://en.wikipedia.org/wiki/Anthony's_ ... stchester)
http://3dparks.wr.usgs.gov/nyc/parks/loc10.htm