This Is MS Multiple Sclerosis Community: Knowledge & Support

Well, i finally got my wife's MRV report from the hubbard foundation and the best i can tell is flow seems normal. Also, only 4 lesions show
excessive iron. Considering she has 30 of them it just seems there should be more. I find this report to be somewhat complex so "please" if anybody can chime in and tell me in a few words if something in this report is clearly abnormal it would be greatly appreciated.

Also, if anybody is interested in what the full Haacke report looks like
from the Hubbard well here it is!!

https://acrobat.com/#d=gYUFGVp1XQyELmPaiFzK8g


Thanks,


Bob

Stenoses in the upper/lower right and left IJV's is indicated (by the report). Mind you I'm repeating from the report, (page 6) very interesting .pdf all around though. I'd love to print this out and read later since in is so long, but the stenoses is at least one thing noted. We're they going to do a follow up visit for you?

Not to sound all doctorish, but it goes without saying that our typical suspects are involved, underneath collarbone, and upper cervical (neck). Plus on page 7 it says the azygos vein is pinched.

Also, if you look at page 14 it says, " The right and left IJV have positive volume flow rate while they also have negative volume flow rate. This indicates a circulatory flow pattern where there is bi-directional flow within the vessel at the same time."

Wow, if that doesn't sound like reflux, I don't know what does.

Do you have any date/location for treatment?


Mark

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I'd have to go back and review some of the pre-CCSVI MS research on iron in the brain. I think the findings were that the more lesions one had, the less iron! One thought was that when the immune system attacks, it cleans out the iron. So someone with a less aggressive immune system would have fewer lesions but more iron.

would there be the possibility that the 4 lesons that have excessive iron are the most troublesome at this point. causeing symtoms to worsen. since iron messes up the good things because it in deposits attracts bad stuff such as bacteria etc. some of us only have 1 lesion or a few but i'd be willing to bet that the location of that lesion and the amount of iron deposit means a lot.

i hope somewhere there are docs that are working on a safe way to remove the iron deposits or at least incorporate blood letting an already proven safe way when monitored that removes iron deposits. in some cases getting the flow may not be enough.

Hi Mark thanks for replying. The report definitely shows stenosis
RIJV at confluence. What concerns me is the pinching on RIJV, LIJV,
and Azygos vein. If muscle or bone is causing this pinching than my
concern is Venoplasty may not work. I think this would be a good
question to ask one of our good doctors on this forum.

Wife will have follow up after procedure but this could be some time
down the road. For now, wife has no ms symptoms and has a EDSS score
of 0-0.5. She's decided to wait and see how this whole CCSVI theory pans out along with IR's improving on procedure. However, if she has
another relapse or starts to get worse than this could change the whole
equation.

The location of treatment will be @ Vascular Access Center Seattle,
Washington which is only a 3 hour drive and just got IRB approval.

Bob

Hi Cece i think you bring up a good point that needs more research. Wife
has 30 lesions and was dx MS only 10 months ago. Also, she's only been on DMD for 8 months. Here's an interesting question! If wife has an aggressive immune system mopping up excessive iron ( after all isn't this what the current MS theory is?) than one would have to wonder what effects the DMD's would have on iron in the brain..?? I mean, if DMD's suppress the immune system could it be possible that one could have excessive iron in the brain?? Of course this over a long period of being on DMD's.


Also, i've heard (correct me if i'm wrong) that excessive iron can lead to more severe disabilities. If this is so than one has to wonder what affects DMD's would have on this disease. I've read somewhere (again correct me if i'm wrong) that some research shows that DMD's could possibly accelerate this disease. I'm just thinking out loud!




Bob

Blossom, for now wife is in remission of RRMS. She has no MS symptoms
and was dx MS only ten months ago. Again, if the current auto immune
theory is an overactive immune response possibly cleaning up the excessive
iron. Than you have to wonder what effects DMD's would have on iron
being DMD's suppress the immune system. Could it be MS'ers on DMD's
for a long time could have excessive iron??

Bob

i believe most anything possible could be up for grabs. since ccsvi there has been an eye opening for a lot of us. but if you notice there are too many things coming to light that is trying to make a full circle or connect the dots.

for sure the old ways of treating aren't worth much. and for your thinking about the immune systrem being surpresed and not being able to clean up never made much sence to me. so sure i think what you are thinking is very possible. things in our body were designed to work with everything having a purpose. and with the immune system being surpressed my thinking would be that it would only add to our problems.

since she is early on you have some time. did she ever have trauma especially to the head or neck--check out hemochromatosis--hughes syndrom lymes disease. don't settle. search-i stand firm that these symptoms they named ms have different causes and there will be different fixes. don't take the word of a lot of these neuro.'s. they are only humans "practiceing" medicine. they are taught one way and not many will step out of that box. so you have to.

Like everyone here I must make the disclaimer -- not a doctor, just someone with the ever-present holes in the brain and a supreme interest in figuring out what to do about it. Welcome. Love seeing a couple working together in this.

Trust your own instincts, do your own research, and own your own approach. No one but you guys will have to live with your decisions in the years to come -- your medical team can make suggestions, well-meaning people can make suggestions, but you and only you will have to wake up every day and say, "We are living with the results of what we chose to do (or not do) last year . . . five years ago . . . fifteen years ago . . . "

Eleven years ago, when I was first diagnosed, I did my own investigations. I was lucky to have a background that made a difference and to have contacts who could help. I did not accept the first information offered in any way. (That's me.) I had to spend a long time before I found a neurologist who was comfortable with a knowledgeable client but it's critical to keep looking till you find the right medical people. They do exist!

We don't know yet how CCSVI will will factor in for individuals, but endothelial health appears to have a big role in multiple sclerosis no matter what. There is wonderful information here on maximizing your endothelial health, your MS lifestyle, and so on.

I'm sure you've heard plenty of people say it isn't the number of lesions, it's the location. I know someone severely disabled with an almost perfect MRI and just one devastatingly placed lesion, and other people with snowstorm MRIs who are seemingly unaffected. Weird.

I love it that you're actively thinking and questioning. Orion -- the hunter -- hunting for info about MS. Try searching through old threads here to find other people musing on these issues; it is so exciting, and will fuel your discoveries and your decisions.

I love TIMS. I have been reading and discovering here for years and I still learn something breathtaking on a regular basis. Not even necessarily about MS. Of course, that may be because my memory is so bad, but I also credit the members here. I hope you enjoy being here. Best of everything to you both.