Could one possible sense the IJV stenosis

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

Could one possible sense the IJV stenosis

Postby Frank » Thu May 06, 2010 8:54 am

Hi,

for some time (maybe two years or so) I have a sensation of pressure/tightness left and right besides of my larynge. Especially during sports (I did some swimming) the sensation was most pronounced.

I once asked a doctor about it and after a sonography of my thyroid glad he said that the glad looked somehow irregular - different sizes on the left and right side and more perfusion that expected. All that might point to a hashimoto thyroditis - but the following lab-work showed that I dont have the specific antibodies and also the thyroid hormones are just fine.

Would you think that one could feel a stenosis in the IJV? Might this be what I experience? Do others who where diagnosed positive for CCSVI also report about such sensations of pressure and tightness?

Thanks!
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby rssugg » Thu May 06, 2010 8:58 am

I have been talking to my neuros (in Raleigh and Charlotte) about tightness in my neck to my shoulder on the left side and it is worse some days than others. I can feel it about 90% of the time, and when I cant feel it, my day is perfect (no fog, no ON symptoms, nothing).

I think you can feel it. I am sure not everyone can feel it, but some folks surely can tell there is something wrong.
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Postby caraboo » Thu May 06, 2010 10:47 am

Hi,

I have exactly the same. Sometimes it feels that someone has put their hand round my throat and squeezing my throat.


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Postby Frank » Thu May 06, 2010 1:16 pm

@caraboo: Did you already have a CCSVI examination? Did they find issues with your veins?

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby caraboo » Thu May 06, 2010 1:50 pm

Hi Frank,

No I have not been tested, I go this month and hopefully I am.
What about yourself?

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Postby ndwannabe » Thu May 06, 2010 1:54 pm

Yes, i continuously feel like I am being strangled.
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Postby Frank » Thu May 06, 2010 2:41 pm

Thanks for your feedback. Currently I'm carefully watching the CCSVI development. As I live near Frankfurt, I could possibly try to see Dr. Vogel, but I guess that the waiting list would be really long and I'm also not really sure whether Dr. Vogel would be propperly trained and equiped to give me a definite CCSVI diagnosis.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby caraboo » Thu May 06, 2010 2:49 pm

Hi Frank,


I had a appt with Dr Vogl. I cancelled it as he does the testing but stopped doing the procedure. I think he is good at testing, A few people from tims have been to him and been diag ccsvi. I just did not want to go all that way and only be tested.



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Postby JohnAm » Thu May 06, 2010 3:05 pm

Hi,

neck tensions are apparently very common. See earlier post:
http://www.thisisms.com/ftopic-9657-0-d ... rasc-.html

I got relase from my severe neck pains and tensions when I was liberated in Poland on the 15th of April, pretty much disappeared on the operating table. Always left side so no surprise when that side needed ballooning and a stent. :wink:
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Postby Frank » Fri May 07, 2010 5:22 am

Does Dr. Vogel still do doppler AND MRV?
Why did the stop doing the liberation procedure? Is anything known whether they are going to restart it, maybe even taking part in a trial?

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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sensations in neck

Postby GinaMass » Fri May 07, 2010 12:30 pm

Yes, I have the sensation of blood doing something strange in my neck. I can feel it pounding almost to the point of feeling choked or someone wrapping their fingers around my neck. Seems so strange, like the blood is not flowing properly. Headed for doppler testing next month. Lets hope for the worst which is really the best!!
Gina
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Postby LR1234 » Fri May 07, 2010 12:41 pm

Does anyone else have a feeling of pressure at the back of the neck? I have pressure and the feeling of lightheadedness in that kind of ridge part at the base of the head/top of neck. I haven't had it since being liberated although it came back recently during relapse of vertigo.
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Postby caraboo » Fri May 07, 2010 1:50 pm

Hi Frank,


I think it was the hospital that stopped him. He is still doing doppler and the other tests. What he states is that you have to have insurance so that if anything goes wrong, you are covered. Dont know when he is restarting.


Take care
Caraboo[/b]
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Postby bluesky63 » Fri May 07, 2010 3:38 pm

Wow, amazing to read. Obviously not at all "scientific" but I have had the feeling of being strangled for so long. I even joke that I must have been strangled in a previous reincarnation. I have thought of it as the MS hug around my neck and throat. It drives me nuts. This would be a great thing to remove from my life!
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