Page 3 of 8
Posted: Sat Jun 20, 2009 7:45 am
by bestadmom
response to WhyRwehere
Buffalo has started the scanning already. They are taking appointments in Sept but they offered me July 14th - I can't go then. They are keeping the data for themselves since this is a study, but they will give you a disk with your mrv if you ask the technician. You'd then need to take it to another doctor for analysis and interventional surgery.
Hopefully you can jump on the July 14th date- Niagara Falls is a great destination, see them when in Buffalo!
Posted: Sat Jun 20, 2009 7:50 am
by LR1234
.......
Posted: Sat Jun 20, 2009 8:35 am
by peekaboo
LR - It sounds like you are heading in the right direction
Posted: Thu Jun 25, 2009 11:05 am
by LR1234
.......
Posted: Thu Jun 25, 2009 11:14 am
by Sharon
LR -
Cheer's Jeff had a bunch of brain lesions, but his physical disability was at an EDSS of 1.5. So, when you say
I am starting to think that the stenosis comes as you get worse rather than being there from the start or I would have it now:(
Kind of hard to make a judgement call - Jeff at an EDSS 1.5 - 20 brain lesions. I am at an EDSS of 3.5-4.0 and I have a few brain lesions.
It is really important that the scans are done correctly and that they are read correctly. You would be the only one so far (including MS'rs in Zamboni's research) with clinically diagnosed MS and no stenosis.
You just mentioned the jugulars - what about the asygous?
Sharon
Posted: Thu Jun 25, 2009 11:49 am
by chrishasms
123
Posted: Thu Jun 25, 2009 12:25 pm
by whyRwehere
Thanks bestadmom for the info. I just noticed your answer about 5 days later...how did that happen? Well, I've been to Niagra Falls back in '77 or '78 , but we might go again. I am a little nervous about putting my husband through it all with the enhancement...which he has never had, without having any insurance to cover him while he is there, in case it causes problems. have to think about it.
Posted: Thu Jun 25, 2009 12:53 pm
by guitarguy
chrishasms wrote:I am an EDSS of 6.0. The more I am seeing the more I am thinking of going to Cali. I really want to walk again and not feel like crying when I do lol.
Didn't the revimmune help you much?
Posted: Thu Jun 25, 2009 4:14 pm
by peekaboo
LR wrote:
Starting to get a bit worried now...If I have RRMS how come I had no stenosis in my jugulars:( I am going to double check that the scan was done up to the jaw line. Any advice?
Dr Dake told me he was concerned about Zamboni's dopplers missing the jaw line area...can you send them to him? he will glady kook at them.
H
Posted: Fri Jun 26, 2009 11:58 am
by LR1234
......
Posted: Sat Jun 27, 2009 5:51 am
by IHateMS
chrishasms wrote:I am an EDSS of 6.0. The more I am seeing the more I am thinking of going to Cali. I really want to walk again and not feel like crying when I do lol.
Wanna trade? I am an 8 or 9.
Posted: Sat Jun 27, 2009 6:11 am
by chrishasms
\123
Posted: Sat Jun 27, 2009 7:37 am
by whyRwehere
But, if it is ccsvi, you have fixed the AI issue before what causes the AI has been fixed, and that means it might start all over again. Not to be a downer, but it seems that way to me.[/b]
Posted: Sat Jun 27, 2009 8:22 am
by Lyon
..
Posted: Sat Jun 27, 2009 2:57 pm
by Sharon
Bob -
Buffalo has started the scanning already. They are taking appointments in Sept but they offered me July 14th - I can't go then. They are keeping the data for themselves since this is a study, but they will give you a disk with your mrv if you ask the technician. You'd then need to take it to another doctor for analysis and interventional surgery.
FYI
We have now verified that you will not be given the disk for the MRV unless there is something found which they are not looking for i.e. tumor. You can get the MRI disk.
Sharon