Hi Dr. Succes, I'm not questioning Dr. Hubbard.
It's the email I received from Alexandra that is causing my confusion. She said they are only doing an MRI of the brain. This makes no sense whatsoever as the website lists several other tests (MRAs, fMRI, & brain function imaging) and says Dr. Hubbard only refers to an IR if there's evidence of stenosis.
As we all know by now, one cannot detect stenosis from an MRI of the brain. So is Alexandra mistaken? I hope so!
So until Alexandra clarifies (or someone else at Hubbard) what tests I'm getting, I won't ask my doctor for the referral.
I wish I knew someone else to go to!
thnx , s.
My question has been answered
Dr. Success ? 
selkie - hmmm ........ I can't really come out and say what I think is happening ........ so ........ I would keep trying to see Dr. Hubbard if at all possible . You might find the effort worthwhile .
Not too suprised that someone in a Neurolgist's - staff employee - lists MRI's of the head ......as a service they offer
Dr. Hubbard does not perform CCSVI intervention procedures as he is a Neurologist ............ he sends you to his IR people for that.
Understand ?
Hubbard - to - Haacke - to IR .......... to Liberation
Aloha ..... hang in there selk ...... keep swingin' kid
Mr. Success
selkie - hmmm ........ I can't really come out and say what I think is happening ........ so ........ I would keep trying to see Dr. Hubbard if at all possible . You might find the effort worthwhile .
Not too suprised that someone in a Neurolgist's - staff employee - lists MRI's of the head ......as a service they offer
Dr. Hubbard does not perform CCSVI intervention procedures as he is a Neurologist ............ he sends you to his IR people for that.
Understand ?
Hubbard - to - Haacke - to IR .......... to Liberation
Aloha ..... hang in there selk ...... keep swingin' kid
Mr. Success
I suppose a question to ask would be if anyone has flown out to the Hubbards and then been turned away after testing and not referred to an IR?
Anyone know?
Anyone know?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
That's an excellent question, Cece.
The thing that threw me, Mr. Success is Alexandra's statement the brain MRI is the "only" test and not the others on the website's list.
I know you're encouraging me to have some faith in what they're doing...
Today was just not my day for communicating. I probably drove them nuts with emails today when I should have just gone back to bed and slept all day.
You know that song from Alice in Wonderland: "If I only had a brain..."
I think I shouldn't bother them with more emails.
thanks for the suggestions & if anyone knows the answer to Cece's question pls share. Thank you!
The thing that threw me, Mr. Success is Alexandra's statement the brain MRI is the "only" test and not the others on the website's list.
I know you're encouraging me to have some faith in what they're doing...
Today was just not my day for communicating. I probably drove them nuts with emails today when I should have just gone back to bed and slept all day.
You know that song from Alice in Wonderland: "If I only had a brain..."
I think I shouldn't bother them with more emails.
thanks for the suggestions & if anyone knows the answer to Cece's question pls share. Thank you!
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lazydean
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Question about The Hubbard Foundation
check this website.
http://www.patientslikeme.com/forum/show/72923?page=6
It clears up yer questions about procedures.
http://www.patientslikeme.com/forum/show/72923?page=6
It clears up yer questions about procedures.
I do believe Selkie heard from Arlene Hubbard and the confusion on which tests are done has been cleared up, Selkie - would you post so that people know this has been straightened out?
It is all the scans I listed before, and to my knowledge no one has been turned away though at some point, someone's got to come up negative, maybe someone who was dx MS but has something different..? And if one of us is negative, we of course cannot blame the Hubbard's for that - they are going above and beyond to help us all!
It is all the scans I listed before, and to my knowledge no one has been turned away though at some point, someone's got to come up negative, maybe someone who was dx MS but has something different..? And if one of us is negative, we of course cannot blame the Hubbard's for that - they are going above and beyond to help us all!
Oh, sorry I didn't do that - I think I did over react a bit to Alexandra's email (by the way I've changed my name from selkie to Salander) as she was responding in part, not in full.
Yes, Hubbard does the full battery of tests that are listed at their website. If using the Haacke protocol the findings are positive for CCSVI they refer you to an IR; I believe there are two locations, one on an out patient basis for people who don't have insurance, and another in hospital.
Arlene Hubbard was very helpful in answering my questions and very gracious about my fears of not being adequately tested.
I still haven't made up my mind yet; people who want to go straight for the vein catheter test may wish to do so, but I would definitely want to consult with the IR first.
Hubbard foundation sounds like they will be there to answer our questions - at least that's my perception so far. The fact they're on the west coast and have IRB approval is a plus for me.
I was impressed with how quickly Arlene got back to me, as I know they must be swamped with emails.
s.
Yes, Hubbard does the full battery of tests that are listed at their website. If using the Haacke protocol the findings are positive for CCSVI they refer you to an IR; I believe there are two locations, one on an out patient basis for people who don't have insurance, and another in hospital.
Arlene Hubbard was very helpful in answering my questions and very gracious about my fears of not being adequately tested.
I still haven't made up my mind yet; people who want to go straight for the vein catheter test may wish to do so, but I would definitely want to consult with the IR first.
Hubbard foundation sounds like they will be there to answer our questions - at least that's my perception so far. The fact they're on the west coast and have IRB approval is a plus for me.
I was impressed with how quickly Arlene got back to me, as I know they must be swamped with emails.
s.
selkie - glad you got it all sorted out ...... and you also have your doctor ready to help ? That's all good news.
I can understand your concerns .... that is a long and expensive trip .... and I would want to know exactly what you are asking .
Money doesn't grow on trees ..... not even in Hawaii
Good luck .... you sound cautious - in a good way - the right decision will come to you ..... that's how it works for me ..... I always sleep on every tough decision ..... then ..... the solution / answer ... becomes apparent .
Aloha
'' lucky you live Hawaii ''
Mr. Success
I can understand your concerns .... that is a long and expensive trip .... and I would want to know exactly what you are asking .
Money doesn't grow on trees ..... not even in Hawaii
Good luck .... you sound cautious - in a good way - the right decision will come to you ..... that's how it works for me ..... I always sleep on every tough decision ..... then ..... the solution / answer ... becomes apparent .
Aloha
'' lucky you live Hawaii ''
Mr. Success
concerned, your 263rd post is the charm! 
Selkie, glad it's straightened out, I think this is a lot for anyone to navigate.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
The website lists all the tests: http://www.hubbardfoundation.org/multip ... tests.html
Lol, yes 263 must be my lucky number haha
Mr. Success: "lucky you live Hawaii" -- eh, brah you visit da islands before? (shaka)
Yes, the tests are listed it was a miscommunication in an email that led to my confusion (and a few warped/missing MS brain cells)
But seriously, yes, it's a lot of information to navigate - most of us who've had MS for awhile focused on learning about the CNS & now we've suddenly got to become vascular experts too.
I've had some very bad experiences with doctors for myself, family & friends - so I do want to be careful. I encourage everyone to ask questions. The Hubbards have been gracious in answering questions, and I think any good IR or treatment center would be the same.
We're really in uncharted territory & with liberation still a "controversial treatment", we all have to find our own path thru the forest ... "with a little help from our friends".
Thanks all who encouraged me thru the melt down. I'll keep you posted on what I decide; I'm not going to rush into it - there's a lot all of us, patients & doctors, are still learning.
Mr. Success: "lucky you live Hawaii" -- eh, brah you visit da islands before? (shaka)
Yes, the tests are listed it was a miscommunication in an email that led to my confusion (and a few warped/missing MS brain cells)
But seriously, yes, it's a lot of information to navigate - most of us who've had MS for awhile focused on learning about the CNS & now we've suddenly got to become vascular experts too.
I've had some very bad experiences with doctors for myself, family & friends - so I do want to be careful. I encourage everyone to ask questions. The Hubbards have been gracious in answering questions, and I think any good IR or treatment center would be the same.
We're really in uncharted territory & with liberation still a "controversial treatment", we all have to find our own path thru the forest ... "with a little help from our friends".
Thanks all who encouraged me thru the melt down. I'll keep you posted on what I decide; I'm not going to rush into it - there's a lot all of us, patients & doctors, are still learning.
TVirgil,
Yes it's beautiful here - but hot! Before I got MS we used to visit the lovely state of Washington. We've lived here for many years, but moved for 10 months to Mt. Vernon! Love the San Juan Islands & my fave big city is - you guessed it - Seattle! Love the fall... ha and we stayed a couple of nights in Forks long before the big Twilight scene. Washington has amazing flowers in the spring time...
aloha!
Yes it's beautiful here - but hot! Before I got MS we used to visit the lovely state of Washington. We've lived here for many years, but moved for 10 months to Mt. Vernon! Love the San Juan Islands & my fave big city is - you guessed it - Seattle! Love the fall... ha and we stayed a couple of nights in Forks long before the big Twilight scene. Washington has amazing flowers in the spring time...
aloha!