This Is MS Multiple Sclerosis Community: Knowledge & Support

I was at the Hubbard clinic in July and just got back from the Jacobs Neurological Institute in Buffalo yesterday. I am scheduled for a catheter venogram in San Diego in 4 weeks.
This post is not about me it's about a friend of mine who has PPMS and has been pulled off all meds.
She wanted to know about my experience at Hubbard and after we talked she has decided that she wants to be tested there. She has limited funds and is on a fixed disability income ( no surprise as her husband bolted when they found out she had MS ).
She has asked ( actually begged more than once) her family doctor to produce a requisition for an MRI at Hubbard. He has flat out refused after consulting with her Neurologist - who also won't do it. She is really upset and has asked for my advice.
I would like this community to help me by suggesting some links to convincing papers and the proper language to present to her MD. She is off meds and deteriorating and his stance and lack of compassion suggests she should just go away and rot. He was very arogant to her and I want to say a lot to him and give him some education that's different than the bias he got from her Neurologist - please help.
She has some cognitive issues and is VERY upset. I'd like to advocate for her.

good morning G,

I am so sorry to read your friends story.

There are some good suggestions on this thread http://www.thisisms.com/ftopict-13292.html

..and a section on talking with your doctor within the CCSVI Alliance website http://ccsvialliance.org/

..lots in the 'note' section of the ccsvi facebooksite http://www.facebook.com/notes.php?id=110796282297

good luck, pCakes

garyak,

I'm sorry to hear of your friend's struggles. PCakes has suggested some excellent links.

May I suggest a different approach? Rather than trying to convince a doc (or two) whose heels are dug in, what about connecting with other folks in the area who may know of a doc who IS willing to write the rx for Hubbard? For example, here in WA some folks are getting the rx from a naturopath... it can also be from a chiropractor.

This may be a less frustrating path...

Best of luck to you and your friend.

Hi Gary,
I think I tend to agree with what pegmegrund said. I think that going back to her gp will be difficult, but if she is local to where you live, would it not make sense to ask the gp that has already referred you to Hubbard? I felt I was in the same boat. I had a terrific relationship with my gp while I lived in Fox Creek, AB & I know he understood that I had my faculties but it takes a long time to get that kind of raport again, so I just avoided going to a doctor here for help to get to Hubbard or Barrie, ON - because I need a referral for them. I was opting to get onto lists where I could self-refer. I finally broke down & went to a clinic that operates on a walk-in basis to ask for a referral for those 2 places. I had initially gotten my med file transferred to this place but it never worked out, so rather than going to the doc I now trust & ruining that relationship (I just didn't have faith that it would not be a dispute & I don't want to close that door), so, I went to the walk-in. I just took the scheduling info from the Hubbard website & the CCSVI testing info from the Barrie Vascular Imaging websites. He asked if he could keep the info & asked me to contact his assistant the following workday for the referral letters but he wanted to read what I had given him. He did give me the req for the blood work, so I was hopeful & he did come thru. He did give me a spiel about the memo that the clinic put out, quoting the MS Society's stance on CCSVI, blah,blah... I told him about the fact that Hubbard is a neuro and why he became involved in CCSVI and watching his presentation at Warren. Wound up with some help & didn't burn any bridges with a doctor I care to develop a continuing care relationship with. I hope you can help her... she is fortunate to have an advocate. BTW, when is your procedure? Best wishes to you!
Deb

garyak, good luck to you! I'm going to be possibly faced with the same
dilemma; I also have to get the rx for Hubbard. I'm hoping my GP will
write it if I can't get one from the neuro. However, unlike your friends
situation i have good insurance that i can choose any neuro i want. In
fact if need be I'll fire him and move on.

Folks, I just don't understand this. Most not all MSer's that I've read about
are seeing great benefits in reduction or elimination of their MS symptoms. Treatment for vascular (CCSVI) malformations has the potential of being a breakthrough in treating MS. Are neuro's afraid that their labeling of MS as a auto immune disease might have to be re-thought and changed to a vascular disease. "Heaven for bid the IR
community tells us the neuro community we might have gotten it wrong!"

Folks, don't you find it interesting that Kuwait has approved CCSVI and is now treating their people for this disorder. Don't you find it interesting
that the percentage of positive results for CCSVI in Kuwait correlates
with the same results Dr. Paolo Zamboni got testing his patients. Click
here http://www.ccsvikuwait.com/Details.aspx?d=4

I agree with Peg. Hubbard told me even a chiropractor can write the script. Or if she knows a holistic M.D. I'm sure she could get a script. Don't waste your time trying to convince doctors whose minds are closed. My neuro wouldn't give me the Hubbard script, but my PCP will. You just have to search for an open mind; don't bother with the closed ones.

Thanks you guys. My friend already has an appointment with another GP for aug 31. There is no guarantee here either.
Most of what I want to accomplish is to go to bat for her. This jerk has treated her like meat. I am very offended and she has asked me to help. Thanks to all these good replies. My procedure is sept 20 in san diego.

If they do not want to read the papers there is no way you can convince them. Just try to change to other doctor. If your country does not let you choose your doctor, try to tell them you moved to other residence (family or friends) and ask for a new doctor in that locality.

Maybe you can try also to send to your current doctor the papers by burofax so that he cannot say later he didn't know about CCSVI. He will think that you are trying to sue him in the future and he will be at least more polite.

_________________
You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Gary,
Check out this link. It is the link posted on another thread "Research Paper MS as a Vascular Disease". written by neuros.... may hold some weight with a doc... Just in case you happen to miss that thread, I added the link here.

http://www.shreveportphysiology.com/Ale ... MS.pdf.pdf

I helped answer my own question with this great link;

http://www.impact-ltd.ca/ccsvi-victoria-links.htm

The answer is really not that complicated:

GET ANOTHER NEUROLOGIST!!!!

I switched from Dr. Freedman, who is a low-life piece of elephant @#$% that should be shot at dawn!