This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello, I would like to know if anyone has ever experienced something that is happening to me.

Due to MS, I guess, I have lost a some sensitivity in the left side of my hip, although not to the point of being numb.

But during the night, if I sleep in the fetal position (that is, on one of the sides) I notice, when I wake up, that the left side of my body is numb. This feeling dissapear quickly if I change from the fetal position to looking to the ceiling (on my back). If when I wake up, my position is the looking-to-the-ceiling one, then it doesn't feel numb.

When I was diagnosed MS, I had myself analysed for CCSVI following the Haacke CCSVI protocol, but the doctors said everything was OK in my veins.

But I recently read something in internet about how different positions of the body (supine, upright) could affect the flow of the CSF (cerebrospinal fluid) and may affect in the symptoms and evolution of MS.

When I was screened for CCSVI (MRI) I was scanned only in the looking-to-the-ceiling position. In which positions were you screened for CCSVI?
(They also studied my neck while I was sitting on a chair with a device that is like the one used for screening pregnant women).

Lately, I'm trying to sleep in the looking-to-the-ceiling position, but it is difficult because when I get asleep I change to the fetal position, and it is also not very comfortable. And I have not noticed any improvement since I'm trying to modify my sleeping position.

(Sorry for my scant vocabulary of english)

that would be a good question to ask dr. flanagan here at tims-his thread is "ccsvi-ccvbp" author is "upright doc"

Thank you Blossom. I just reposted in the CCVBP thread.

I don't understand why, but if I do anything that stretches the nerves in my spine, my right knee just collapses when I walk, and it becomes painful etc. sleeping curled up or with on my side with one knee drawn up is one of the things that stretches my spine. If I sleep on my side with a cushion under the knee of my top leg it's a lot better. Other actions that cause knee pain and weakness are sitting in a chair with a concave seat, picking up something from the floor or standing or sitting with bad posture. Ironing or preparing food at the bench are particularly bad.

There are muscles in the neck that can cut off blood flow in a jugular if you turn your head to one direction, or that cut off blood flow when looking straight but the flow is restored when you look to the right.

When I was tested for CCSVI in Brooklyn, my doppler ultrasound showed no flow in the left jugular when looking straight ahead. Then when I turned my head to the right to see what they were talking about, the vein opened up and they tried to get the measurements but I realized I had messed with the exam and quickly turned my head straight forward again and the vein disappeared on them. They were trying to figure out where it went when I suggested that it was because I turned my head. I looked to the right again, and they got the measurements.

That was all while sitting up. They also scanned my veins while lying down. It was about 45 minutes for the exam but I had met the criteria for CCSVI within the first minute or two. Absolutely the blood flow is different while lying down compared to sitting up compared to different rotations of the head. Cerebrospinal fluid drains into the jugulars so a blockage in the jugulars can impede that drainage.

If you are having problems while sleeping in the fetal position but no problems upon waking if you sleep on your back, then it's possible that your blood flow is better when you are on your back, and that on your side it is worse. Maybe being on your back keeps your veins fully opened, and being on your side causes a jugular to be compressed by one of the muscles in your neck.

Hope that helps. I don't know that I'd accept the diagnosis of no CCSVI (if you also have an MS diagnosis) without getting tested again by a different doctor. The imaging studies have been all over the map (some find CCSVI in everyone, some find CCSVI in no one) and it seems that different operators get different results. And even then what's seen on the ultrasound may be different than what's seen when the catheter is actually inside the veins.

My CCSVI analysis consisted of an MRI of head and spinal cord and duplex-sonographie of the neck. The MRI was performed with me lying on my back. The scanner of the neck was performed with me sitting and looking to different positions (I don't remember lying during the scanner of the neck).

The doctors said found MS lesions in the brain and in the spinal cord, but they said they found nothing bad with the veins in the neck.

Maybe it wold be a good idea be screened for CCSVI again, but the first time it cost me almost a month of my salary (it was not covered by my health insurance).

Anybody knows for CCSVI doctors in Germany?

@am65. when pursuing an MRI/MRV you should make sure it is done with the 'Haake protocol' which analyzes blood flow. I wonder if there is a list of centres offering this? Do search: haake protocol Germany

PN

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Albany 2010. Brooklyn 2011
Hurry up and wait.

Oh that is expensive.
I think doppler is considerably cheaper than MRV if you go the doppler-only route. The big concern is if you can find a doc who is experienced with CCSVI.

I don't know anything about these guys: http://www.ccsvi-center.com/About_CCSVI-Center.htm