neurologist appt, take two

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

Postby Cece » Wed Apr 27, 2011 9:04 pm

After this appointment, I am more open to moving on. I actually like talking CCSVI -- this should be no surprise -- and I like talking CCSVI even if we are in disagreement, but.... The neuro exam was rushed. I'm really tired today. I got back to my house at 6:30 pm yesterday after leaving at 1:45 pm for the 2:45 pm appt. It's a big expenditure of energy.
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Postby joge » Wed Apr 27, 2011 11:16 pm

Hi Cece!

I'm surprised you remember all the details of your visit! Great. Did you take notes? (I always -have to- do). If not: your report proves your cogfog is gone!
I'm ready, I'm ready !
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Postby bluesky63 » Thu Apr 28, 2011 3:37 am

This type of experience -- the careful preparation, the research, the ability to provide accurate information where there had been assumptions or hearsay -- this is what will leave a positive impression. It is great that you were able to maintain your dignity and respectfulness, on both sides, it sounds like this time. No matter what approach you want to take with your own health, it is so important to be able to discuss it with your doctor and feel like you are respected for your choices.

It sounds like you handled this wonderfully! (No surprise!)

It comes across perfectly that one of the main things having MS has taught so many of us is HOW TO WAIT. :-)

Next time bring a few CCSVI brochures to scatter around the waiting room. Just simple factual information to address some common myths. Put them inside magazines, in the racks, on the tables, in the bathroom. You never know whose life you could touch. It might even be the doctor or his staff. :-)

Now, I wish I could be in person to say this part -- I am so much better in person, and I want it to come across in the most nurturing, embracing, caring way -- everyone makes very personal choices, and I do not judge anyone -- how could I anyway, since I am not been on any official MS therapy since I have failed them all and had NABs and have anaphylaxis to infusions -- but speaking from the perspective of someone who has lived with significant disability. I have from the very beginning tried to take what I think of as a "shotgun" approach to multiple sclerosis.

In a nutshell, I would do anything within reason to keep from having disability in the first place and then to prevent more disability. I would not pin my life on just one treatment. I have personally tried to use the best of both mainstream and alternative approaches -- always with the goal of keeping a healthy body for a lifetime -- and being there for my children.

And while I am definitely a supporter of CCSVI, and have personally experienced its benefits, I am not sure why, given how extremely new it is, we should be utterly confident that CCSVI is the one true answer to preventing disability in a possibly systemic multifactorial lifetime disease.

I would suggest that we continue to take advantage of every available tool in the arsenal -- again, looking at a lifetime perspective. It is complex to understand how various approaches interact. This is where continued personal research is crucial, and continued coordination with the right medical team is crucial. Don't we all want advisors who understands our true needs and can give the right advice?

I am not so much addressing you specifically, Cece, but your considerations around Copaxone are what made me say this. I have no place at all in your medical decisions, and I feel incredibly invasive even discussing this, but I am doing this for the general concept. Again, I wish I could be in person to get the right tone! My point is to say again that when we're dealing with MS, it can be a really awful disease, and unless you've seen that, you don't understand, and people should want to do everything they can (while still keeping their underlying health -- avoiding side effects like, say, death) to keep from progressing and being disabled.

I think that of the DMDs, Copaxone is fairly benign. Unless it is contraindicated for someone's particular situation I might consider sticking with it. Many people I know who have ended up doing well over years have been Copaxone people.

And . . . maybe it doesn't have to be the MS expert, but continued monitoring, even if it's just to get the meds and to demonstrate continued symptom relief (and to get ready for book club!) will have a positive impact.

Many people turn to a family doctor for a closer relationship. Is this an option? That's what I did after my procedure, and this was a person not only open to the concept but amazed and delighted by it. :-)

You have really opened yourself to the world as you go through this experience. It is incredible to see it through your eyes. I am so happy for your children, your family. I hope that you continue to see benefits. Thank you for sharing everything so gracefully with your online family. :-)
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Postby eric593 » Thu Apr 28, 2011 9:58 am

Cece wrote:What's needed, according to my neurologist, is an angiography study. Not these imaging studies but the real thing.

I say, well, yes, but you can't do that with healthy controls.

Sure you can, he says.

You think that would get past an IRB? I ask.

He does think it would get past an IRB.

I am dubious about this. There would have to be very compelling reason or research for an IRB to allow an invasive technique like that.

Well, yes, he says. He can't just pull an idea out of nowhere, just completely out of his butt, and get that past an IRB.



Well, I guess it did manage to get by an IRB because UBC is doing a catheter venography comparison of MSer's and healthy controls. No treatment, just examination of veins using catheter venography of MSer's and healthy controls.

I received an invitation to participate.
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Postby Cece » Thu Apr 28, 2011 9:07 pm

Bluesky, sage advice indeed, and it fits with my struggle with this decision.

Copaxone may even help with remyelination, according to one study, as I understand it. But the painful injection site reactions. And the lipoatrophy divots. And not knowing if it is necessary or does much good beyond placebo. I doubt that I am free of it, I expect that this is a wonderful little break, and that I will end up back on it within the year, but I am not entirely decided.

LOL about the MS having taught us how to WAIT. Too true! We are skilled in enduring.
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Postby Cece » Thu Apr 28, 2011 9:15 pm

eric593 wrote:Well, I guess it did manage to get by an IRB because UBC is doing a catheter venography comparison of MSer's and healthy controls. No treatment, just examination of veins using catheter venography of MSer's and healthy controls.

I received an invitation to participate.

Eric, interesting! Did you accept the invitation?
I am not sure as either the MSer or the healthy control that I'd want the dye and exposure to radiation at no benefit to myself directly. I hope the study is done well, regardless of results!!
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Postby Cece » Thu Apr 28, 2011 9:23 pm

bluesky wrote:You have really opened yourself to the world as you go through this experience. It is incredible to see it through your eyes. I am so happy for your children, your family. I hope that you continue to see benefits. Thank you for sharing everything so gracefully with your online family.

So far, so good with the benefits...so far, very good. The last few weeks, I've seen more improvement and it's over two months now since my procedure...it's wonderful to still be getting more.

As for opening myself up as I go through this, I am lucky to have had you guys here to share this with, because getting liberated is the strangest experience I have ever had. And it takes bravery to make the jump and it takes knowledge to have that bravery. TIMS is a very good place and I have received far more than I have given.
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Postby Cece » Thu Apr 28, 2011 9:29 pm

joge wrote:Hi Cece!

I'm surprised you remember all the details of your visit! Great. Did you take notes? (I always -have to- do). If not: your report proves your cogfog is gone!

My cogfog is not entirely gone ... but it has improved. "Look, ma, no notes!" :)
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Postby bluesky63 » Fri Apr 29, 2011 3:16 am

"The strangest experience I have ever had . . . " :-) You are spot on -- this experience has made me reconsider *everything* I thought I knew about multiple sclerosis. And I have been actively immersed in it for eleven years.

Unless you have experienced this, you can't imagine, and I can completely understand why that seems so mystifying to anyone else. But the vascular specialist doing the procedure -- the person there -- the family, the friends -- wow. Yes, this needs to be studied to find out why it has the effect it does, how to be most effective, how to avoid complications, how to make it durable, everything. But it's not religion, it's a medical cause and effect that is being refined right before our eyes, changing our futures.

Personally, it's brought me an extra year of time, every day of which is precious to my children and me.
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My Copaxone Experience

Postby MarkW » Wed May 04, 2011 1:22 pm

I did not have any injection site problems (I got the syringe to body temp before injecting and rotated the injection site over 14 sites). My neuro stopped Copaxone (probably to save money) after I had a relapse. I agree with Bluesky it is a low risk DMD. Is Gilenya available in the US yet ? Its oral and may be helpful but is new and expensive.

I love your neuro stories. I just shrug my shoulders and say its my body and my money. Neuros have generally given up challenging me.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Wed May 04, 2011 4:29 pm

Thanks, Mark, and bluesky, exactly so. Gilenya is available but it has even more side effects/risk profile than the interferons (or so I read on a Wheelchair Kamikaze blog, if my memory serves.)

At least at this neuro appt my neuro did not bring up that we were all committing insurance fraud or some of his more choice statements at the previous appt! And he had previously claimed that Dr. Zivadinov was no longer behind CCSVI. In the recent BNAC interpretation of results, it seems more nuanced than that, but there has been some feelings that Dr. Zivadinov isn't 100% on our side.

Another of my neuro's statements at this most recent appt was that by treating patients outside of a trial, they were going to run out of patients willing to have this procedure in trials. Some patients are gung ho and others don't want to hear about CCSVI.

It is hard for me to imagine not wanting to hear about it, although perhaps not the way he presents it! :)

He also ordered a full series of MRIs for me (spine, cervical and brain) with the thought that when he has a patient start a new treatment, that is what he does. So he is treating my CCSVI treatment as a new treatment.

I hate spinal MRIs. Very clangy and hard to breathe in there. Last time I hit the escape button, this time they are offering to sedate me....
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