This Is MS Multiple Sclerosis Community: Knowledge & Support

My cold-calling email to them.



AND THE RESPONSE.



Um....was that a no?

Any suggestions for my reply?

P.S. I hate rereading my emails after I send them. I only get to work on this stuff at night when my MS brain is running on empty. The errors are embarrassing

Interesting that they mentioned 3 therapies: surgical, endovascular, and medical. What the heck does that mean?

I guess that might be one of my first questions.

Any thoughts?

Am I understanding that right?

Hasn't everyone been treating their MS for ages, despite there being no real proven treatment or no real understanding of the cause? I think doctors are way to careful not to step on each other's feet. The question remains, if you were a "healthy" person with the same problem would they treat it then? If you had high blood pressure, would you have to see your neurologist first? Are you a free person, or does your neurologist own you?

I personally would not see that as a no. I think they are just providing professional courtesy to your neurologist, who is your current treating physician.

Their most "negative" statement was "it is not proven to be causally related or necessarily a target for surgical or endovascular rather than medical therapy". As far as I know, Dr Zamboni has not released his preliminary results from his currently running trial, so I would say it was a fair statement to make at this stage.

It sounded more like a 'maybe' to me rather than a flat out 'no'. It seems that they would want another doctor to refer you as a patient to them in order to get the imaging studies done rather than have you be self-referred.

NHE

I was first rejected for and MRV scan (which I posted in another thread, I think the skeptics one) - I wrote back asking for a less complex scan (since they'd indicated they werent sure if they could do it):



They wrote this back:



So it seems that getting a doc on board to get me referred will be the better route than cold-emailing the vascular folks directly ... but of course my neuro won't do it, and I actually do not have a general doctor - never had a doc, until I started up with the optic neuritis and wound up with a neurologist ...

I agree with NHE. Go for referral. But hey in a month we'll have the Zamboni release including the website on which his materials will be posted for EVERYONE to see print and discuss. That will help us all a lot.

Medicine considers itself to be a science and only doing what is proven. We have not crossed that line yet with this model, though I thik we ar going there.

why said

That to me is the most important thing to remember. autoimmunity is a theory...if Zamboni is right it is either wrong or only a minor co factor secondary to this anomaly.

When an individual patient being treated with the autoimmune theory is not getting results, when will the medical community find it OK to try this new idea? it seems to me like it should be an OK thing to at least evaluate and see what is there.

Surgical intervention is open surgery where they go through the skin

endovascular is where the surgery is performed with tiny instruments through the blood vessels

medical intervention is pills and diet stuff, ie in this case lipitor, low fat diet etc. assuming tht somehow this were the same as heart issues, which I am not sure they are (mine usure isn't my cholesterols is great and my issue is not medically managable--no way there is going to be ore room for the jugs from a pill )

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You guys are awesome! Thank you so much for your replies. I had to read and reread that email to decipher the CYOA talk, but I think y'all are right. It sounds like they may do it if I can get a referral. I hope that doesn't become the hard part. I still have no response from my neuro.