Hubbard

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Hubbard

Postby selkie » Wed Jul 28, 2010 3:13 pm

Hi all,

I'm confused as all get up. My cognitive problems must be off the scale.

Hubbard Foundation is IRB approved, so asking this in a public forum should be okay.

One of their requirements is that you list Hubbard Fdn as your care team at Patients Like Me. So I joined, and when I tried to list them, I couldn't, all I could do is send them an invitation to join. Is that the correct way to do this, or is there some other way to get them listed as my care team.

I'm so frustrated that I can't figure simple things out - well, I just feel like my brain is fried. I'm at my wits end as to how to satisfy their requirements, but having to do this without my doctor's support, and navigating a complicated forum that I didn't particularly want to join and then not being able to figure it out...

Well, you know what cognitive problems can be like.

If anyone has joined PLM & listed Hubbard as their Care team, could you please tell me what I'm doing wrong or if I did it correctly after all. Feel like I'm losing it.
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Postby gothicrosie » Wed Jul 28, 2010 6:44 pm

When you go to choose your care team, look up HubbardFound Database

Hope this helps.
:)
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby selkie » Thu Jul 29, 2010 1:13 pm

I guess I'll give up on Hubbard. They're not responding - they must be too back logged or something. I don't know where to go next. Trying to manage your own surgical plan without any doctor support is crazy-making. Just put me in a friggin strait jacket.
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Postby Cece » Thu Jul 29, 2010 1:22 pm

If you ask on the facebook ccsvi page, Dr. Hubbard's wife and son are frequent posters there. No idea how to get the PLM stuff done but maybe their office could help you with it when you were in for the MRV.

There is also a list of doctors up on CCSVI Locator that has some new names on it.
"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
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Postby selkie » Thu Jul 29, 2010 1:28 pm

Thanks, Cece, I've emailed Hubbard 3 times to ask for help with no response. They require PLM before you can come in.

I'll check out the latest on CCSVI locator. If I can remember where to find that. I think I have the link somewhere... It doesn't help to have memory problems dealing with all this does it?

Thanks again.
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Postby gothicrosie » Thu Jul 29, 2010 1:29 pm

Selkie,

Do not get so discouraged. They are receiving a lot of email these days.

Send them a separate email to confirm the PLM CareGiver request.

The foundation's email is hubbardfoundation@gmail.com.

If you are going to get scanned and/or treated they will prefer to monitor you through PLM.

Cece is right, you can also go to their Facebook page (CCSVI Test, San Diego) and give them a heads up that way.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby selkie » Thu Jul 29, 2010 1:34 pm

Hi,

I did email them 3 times at the address to ask for help with PLM and got no response. I also sent them an invitation thru PLM with no response.

I don't seem to be able to find their FB page? You said CCSVI San DIego? I'll try that next.

I guess I've been trying to get this lined up for so long, and feeling so much sicker every day, I'm losing it.

thanks for your help. Will try them again.
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Postby HappyPoet » Thu Jul 29, 2010 4:57 pm

Hi selkie,

I joined PLM and sent Dr. Hubbard a PM requesting him to be my caregiver, and two days later, I received his PM reply accepting me...

This allows him to answer any questions you might have and to follow your progress online. At first, it took me awhile to find the "inbox" link which is in the top dark blue section in white lettering to the right of the "Welcome selkie" text -- let me know if you can't find it... this will also bring up your "outbox" tab.

He went to the NYC CCSVI symposium sponsored by Dr. Sclafani, so he might be a few days behind. He WILL reply to you at PLM; just give him a couple of days... and give yourself several visits to become familiar with the site.

Feel free to ask any questions!

~HP
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Postby garyak » Thu Jul 29, 2010 5:12 pm

Hi selkie , I PMed you with Dr. Hubbard's son's email. I was there last week and talked to him at length. He is a very passionate ccsvi advocate as is his entire family. I hope this will help you. I loved their family and had a very positive experience there, :)
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Postby selkie » Thu Jul 29, 2010 7:19 pm

Thank you, Happy Poet & Gary,

Wow!! I didn't even consider they might have been in the symposium! Hope they don't get irritated when they see 3 emails from me??

Thanks Gary for the email address - I'll give him a couple days to catch up then will try again next week. I honestly didn't even think of the symposium, though I'd been reading about it avidly.

Thank you all for helping me be a patient patient!

selkie xxoo
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Postby Cece » Thu Jul 29, 2010 10:19 pm

You can also watch Dr. Hubbard's speech from the symposium. I only caught the first few minutes, but he came across as intelligent and caring both. A rare combo!
"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
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Postby selkie » Fri Jul 30, 2010 12:05 pm

The frustration continues.

I'm having so much trouble with the Patients Like Me website, it's making me feel like an idiot.

I did invite HubbardFound Database as my caregiver - twice. I accidentally also invited them a third time using their email address (which you're not supposed to do), but I did send the other two invitations per their instructions.

So I get an email today from Arlene telling me I invited them thru their email address which is not the right way (and yes I did that), but why didn't they also see that I'd sent another invitation - two in fact - to the HubbardFound Database per their instructions?

Are they not going to test me because I'm so stupid I can't figure out the PLM website? And they have no phone number to call. This is making me so depressed to think my cognitive abilities are so bad, I can't follow a simple instruction - tho that PLM website is far from simple.

You'd think PLM would understand people with MS have cognitive problems. I sent Arlene at Hubbard another email yet again, explaining the problems I'm having. But if I can't figure this out - and I'm so depressed lately with my brain function - I can't speak correctly, can't verbalize what I want to say (yet seem to be able to *think* it and *type* it - well, I'm considering the worse.

Reading all the sad stories here about people who didn't improve, and given my age group, I wish I had the courage to just end this.
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Postby gothicrosie » Fri Jul 30, 2010 12:16 pm

Selkie, I am sending you a PM...
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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