Where shall I post the MRI pics for ccsvi investigation?

Daisy3 · Post by **Daisy3** » Wed Feb 10, 2010 9:20 am

Hi there,

My husband had an MRI done recently to determine if he had blocked veins or not,I got the protocols online from Dr Haackes site I think.

The results have come back negative for blocked veins, this delighted the neurologist no end, and has confused and upset my husband and I.
Is it possible that the MRI is wrong? Can I put the pics up somewhere so people can see if we have had the right type of scan done?

Post by **jimmylegs** » Wed Feb 10, 2010 1:28 pm

Heya Daisy, just make an account on photo bucket or some site like that (if you don't already have something similar for sharing images online) then screen shot whichever MRI images you want to share, save them as jpg files and upload them to your online image sharing site, and then you can include links to them in posts here at TIMS.
HTH!

scorpion · Post by **scorpion** » Wed Feb 10, 2010 1:59 pm

Please see the results of the Buffalo study in the CCSVI forum Daisy3.

Daisy3 · Post by **Daisy3** » Thu Feb 11, 2010 2:57 am

Thanks Guys!

thinkingoutloud86 · Post by **thinkingoutloud86** » Thu Feb 11, 2010 9:56 am

Daisy,

Could you post the imaging protocol or the link to it, or send them to me via back channel.

thanks,

TOL

newfie-girl · Post by **newfie-girl** » Mon Feb 15, 2010 2:49 pm

Daisy 3 and/or my MSer friends!

Last year before I had even heard anything of CCSVI, my neck and legs were bothering me so much ie: pain, tightenings, burning sensations, that I was convinced there was something going on with my neck, and I always felt this to be the case! I convinced my GP to send me for a doppler, I think it was bilateral catorid scan. This was negative, so now with all of the CCSVI research, I am beginning to think the results could have been misinterrupted incorrectly.
I am now in the process of having the scans delivered to me, I also would like someone on this forum, who by the way, are at this time probably more experienced and informed, than some of our medical professionals, and at that time, as I mentioned, this was last year 09, they were not looking for CCSVI.

It's all very ironic, how all this is related. I will be interested in actually seeing the report and view the findings, I also will be posting my scans.

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mhawks1990 · Post by **mhawks1990** » Tue Feb 16, 2010 9:03 am

Hey Daisy,
I want to put scans up to but of my MRI's that show how my disease modifying medication is helping extremely. How have your MRI's of the brain turned out? As far as this other stuff people are scanning, hopefully there really isn't a problem with your veins. From my experience, going the approved medical way has never led me wrong. Not to discourage you. I know how it is to hope for a cure but I hope you get the results you want and get better. Just remember, it is easy to make yourself sick worrying about this stuff. It always helps me to venture out in different areas of my jobs and work on my hobbies. If I am not focused on MS all the time, it is amazing that many of my symptoms subside like crazy. Try that for a little bit and see if you feel better. Good luck with it and just enjoy everyday.
Michelle
Texas

Daisy3 · Post by **Daisy3** » Tue Feb 16, 2010 9:21 am

mhawks1990 wrote:Hey Daisy,
I want to put scans up to but of my MRI's that show how my disease modifying medication is helping extremely. How have your MRI's of the brain turned out? As far as this other stuff people are scanning, hopefully there really isn't a problem with your veins. From my experience, going the approved medical way has never led me wrong. Not to discourage you. I know how it is to hope for a cure but I hope you get the results you want and get better. Just remember, it is easy to make yourself sick worrying about this stuff. It always helps me to venture out in different areas of my jobs and work on my hobbies. If I am not focused on MS all the time, it is amazing that many of my symptoms subside like crazy. Try that for a little bit and see if you feel better. Good luck with it and just enjoy everyday.
Michelle
Texas

It's my husband who is unwell, and so far the steroids have not helped-they made him feel worse. They don't really seem to know what to do as they can't quite settle on a diagnosis. The best we have so far is 'atypical MS,possibly'.
The MRI was of his veins and according to the neuro they show nothing.
In the meantime, my hubbys symptoms are getting slightly worse and thats scary.
I appreciate your kind words though:-)

LR1234 · Post by **LR1234** » Tue Feb 16, 2010 9:34 am

Michelle please don't take this the wrong way but I have read both your posts (I see you have only posted two) and it sounds like you are a big MS drug advocate! or a neuro! These drugs don't always work Michelle, if they did this site would not exist!!

mhawks1990 · Post by **mhawks1990** » Tue Feb 16, 2010 7:01 pm

No offense taken at all. I just do better when I am on my meds. Ive tried it both way and have MRIs for my own curosity. I used to say I hate drug companies etc. I am against the monopoly of the drug lobbyists but it is the difference between day and night when I stay on my meds.

sou · Post by **sou** » Tue Feb 16, 2010 7:55 pm

mhawks1990 wrote:No offense taken at all. I just do better when I am on my meds. Ive tried it both way and have MRIs for my own curosity. I used to say I hate drug companies etc. I am against the monopoly of the drug lobbyists but it is the difference between day and night when I stay on my meds.

Wow! You must be the exclusion to the rule!

It is not about the drug companies. It is about buying stuff that not only does not work, but makes you feel like sh*t, too. As if you did not have enough problems, already. As a good start, drugs should be paid only after being found effective. How many drugs are going to stay on the market this way?

Daisy, I am sorry for what is happening to you. Stay strong! My MRV had come up normal, too, only to later find out that it was not. Send it to somebody that knows how to read it or, ideally, have it done by somebody who know what they are doing.

Good luck!

sou

broomdancer · Post by **broomdancer** » Sat Feb 27, 2010 7:40 am

Posted in wrong thread