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drsclafani wrote: perkele
that looks like the carotid artery to me. seems a bit irregular possibly due to some atherosclerosis

DrS

Thank you for your reply,

The thing here is that the picture was taken two years ago when I was 23 years old. I find highly unlikely that what we are seeing here is atherosclerosis. I have been a sportsman all my life and my cholesterol levels have been great according to my doc (HDL=2.2 mmol/l and LDL= 1.1 mmol/l).

I have had three brain MRI:s in two years now and pictures have been evaluated by many radiologists and neuros but none of them has mentioned that there is something worrisome in veins. Although I'm not really convinced that they looked carefully those veins/arteries. Who knows...

At this moment I'm really confused about how to proceed and how worried I should be. I have hyper mobility syndrome diagnosed couple of months ago and I somehow feel that collagen production problems might have affected my veins also.

Should I go to neuro and ask him to order MRA and possibly MRV?

Your advice is greatly appreciated.

Perkele

Perkele wrote:

drsclafani wrote: perkele
that looks like the carotid artery to me. seems a bit irregular possibly due to some atherosclerosis

DrS

Thank you for your reply,

The thing here is that the picture was taken two years ago when I was 23 years old. I find highly unlikely that what we are seeing here is atherosclerosis. I have been a sportsman all my life and my cholesterol levels have been great according to my doc (HDL=2.2 mmol/l and LDL= 1.1 mmol/l).

I have had three brain MRI:s in two years now and pictures have been evaluated by many radiologists and neuros but none of them has mentioned that there is something worrisome in veins. Although I'm not really convinced that they looked carefully those veins/arteries. Who knows...

At this moment I'm really confused about how to proceed and how worried I should be. I have hyper mobility syndrome diagnosed couple of months ago and I somehow feel that collagen production problems might have affected my veins also.

Should I go to neuro and ask him to order MRA and possibly MRV?

Your advice is greatly appreciated.

Perkele

Since you are young, then the diagnosis would not be atherosclerosis. It looks like fibromuscular dysnplasia. but since you say you have hypermobility syndrome, the findings are consistent with ehlers danlos syndrome of the carotid artery.

it is possible to have microinfarcts of the brain that can give white matter lesions and that might lead one to a diagnosis of MS when EDS should be strongly considered.

Of course, i cannot give you particular advice because i know so little of your case. If you were my patient, I would get a proper CCSVI ultrasound to satisfy yourself that you do not have CCSVI.

if i were you, i would consult with a vascular specialist to clarify whether the diagnosis was actually EDS and then i would review with my diagnosing neurologist the clinical evidence.Since MS is a diagnosis of exclusion, you might not have MS at all.


what falls through the cracks!

like i have said all along, we have to get some consensus on how to do this procedure before we can compare it to the gold standard, whatever we think that is.

Are the doctors any closer to coming to a consensus, particularly after the meeting in Italy?

dr s

thankyou so much for looking at my images and providing such valuable feedback.

thanks again, nico

pklittle wrote:

like i have said all along, we have to get some consensus on how to do this procedure before we can compare it to the gold standard, whatever we think that is.

Are the doctors any closer to coming to a consensus, particularly after the meeting in Italy?

no, i dont think so.

drsclafani wrote:

pklittle wrote:

like i have said all along, we have to get some consensus on how to do this procedure before we can compare it to the gold standard, whatever we think that is.

Are the doctors any closer to coming to a consensus, particularly after the meeting in Italy?

no, i dont think so.

We have never treated by angioplasty a disease like this. pure valvular obstructions i am not sure we need to continue to think that restenosis is an essential component of this. We just have to figure out how to do this properly.

It would be tremendous if you are right about that! It's been said that angioplasty is not durable anywhere in the body, why should it be durable here, but if you are right that this is an entirely new sort of disease (pure valvular obstructions) than we should not be limited by the success or failure of other types of angioplasty.

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Liberation wrote:I tried to put the images of my veins on the page, but somehow only the addresses of them got there

I use photobucket, it has a list of choices by the image, one of them is the img code. Clicking it automatically copies it. Not sure if sendspace is the same.

Thanks for the update on Dr. Sinan's methods. When Dr. Sclafani mentioned the possibility of a genetic difference among Kuwaiti patients, that is not implausible, particularly since Kuwaiti has a historically low rate of MS that has gone dramatically up in the last 10-20 years, as compared to other populations that have a historically high rate of MS.

Of note: we have yet another conference starting! The SIR meeting, in Chicago, technically underway already but the excitement starts tomorrow with Dr. Sclafani's CCSVI workshop and then Monday with a full panel of presenters. I don't think our researchers have any more surprises left, do you? They gave us everything and then some at ISNVD.

Liberation wrote:I tried to put the images of my veins on the page, but somehow only the addresses of them got there

Please see the Forums FAQ thread for a discussion about posting images.

http://www.thisisms.com/ftopicp-40760.html#40760

Essentially, the URL must point directly to the image file in order for the [img] tags to work. File types that work with the forum software include .jpg, .gif and .png. After checking the FAQ, let me know if you have any questions.


NHE

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