Sharing Common Symptoms....

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

Sharing Common Symptoms....

Postby Brynn » Fri Jan 08, 2010 7:29 pm

So, I believe that in light of this new CCSVI world of ours, it seems that we have all been a bit suprised by how many symptoms we seem to share....like purple feet, cold feet and hands, LOW blood pressure. I am curious, does anyone else share my issue of a really sore, stiff neck? It comes on every day, in a very specific spot. Now I am wondering if it is some related blood flow thing? Anyone else? Bye, Brynn
41 years old, dx 1998, current EDSS 6.5
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sore neck...

Postby leetz » Fri Jan 08, 2010 7:48 pm

i wake up sometimes with a sore neck....not sure if i just slept wrong...but it happens...MS hug daily ...

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Cece » Fri Jan 08, 2010 8:01 pm

I'm in the sore neck club. It's not constant, but it's daily, and it's localized to the right side kinda at the base of my skull.

Also cold hands, cold feet. Also early on I brought up to my neuro both that I sometimes have the feeling of not getting enough air and that I have pale lips. He didn't consider those issues relevant to MS. I remember asking if I could have damage to a part of the brain that controls breathing (I have a very light lesion load, he suggested I ask my regular GP about asthma, which I don't seem to have)...now I wonder if it's the CCSVI-related hypoxia.

edited to add: I also have low blood pressure.
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Common Symptoms

Postby elyse_peace » Fri Jan 08, 2010 8:28 pm

Hi all,
Doggonit, yeah! I've had a stiff neck for 25 years. It gets better and worse, but it is never gone. I also share low pressure, cold hands and feet (I have noted at night one ice cold foot and one perfectly warm one). These are not the symptoms of MS described in all of the articles I've read.
I'm so excited by the prospect of some relief. I am also so happy to have found this forum. I thank everyone who has contributed information to help in my continuing education.
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Postby nicko » Fri Jan 08, 2010 10:29 pm

Sore neck here as well. Not constantly sore, but it hurts everyday at least some point during the day. Not really stiff feeling like something huring inside.
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Postby eve » Fri Jan 08, 2010 10:47 pm

Not a sore neck but on the left hand side under the skull I always have this weird sensation. Can't describe it any better, sorry. I also have blue feet and cold hand & feet (and nose btw) and I've had low bloodpressure.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby Ruthless67 » Fri Jan 08, 2010 11:12 pm

Hi all,

My hands get so painful when it's cold and turn this awful yellow white. Doesn't need to be much either, just a grocery store or airconditioned office will start them screaming at me. Everyone of my heavy coats has gloves and a package of 7 hour hand warmers. As well as more in the gove box of my car. :lol: They been real life savers more often than I can say.

I've got a new question? What about cracking your knuckles? I've only got about 2 fingers that will pop anymore. Anyone else?
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Postby Johnson » Sat Jan 09, 2010 12:05 am

Ruthless67 wrote:Hi all,

My hands get so painful when it's cold and turn this awful yellow white. Doesn't need to be much either, just a grocery store or airconditioned office will start them screaming at me. Everyone of my heavy coats has gloves and a package of 7 hour hand warmers. As well as more in the gove box of my car. :lol: They been real life savers more often than I can say.

I've got a new question? What about cracking your knuckles? I've only got about 2 fingers that will pop anymore. Anyone else?


When it gets below 60 degrees Fahrenheit, my hands go numb, but with no discolouration, nor pain. I also get a "deep cold" in my body that only 3 layers of clothing, or more, will allay. At the same time, I get the "night sweats" - with minimal blankets, and have for many years before MS/CCSVI reached its awful hand for me.

When I was a teen, I could get nice knuckle pops (I was shown how to do it by a chiropractor), but have not been able to do so for years, now. I'm more likely to dislocate my phalanges. In my foggy memory banks, it is a build-up of nitrous oxide that causes the joints to pop, and even deeper in the fog, there is an issue of NOx in "MS".

Too much high-altitude Malbec to elaborate right now. (fighting iron absorption, y'know...)
My name is not really Johnson. MSed up since 1993
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Postby JohnAm » Sat Jan 09, 2010 7:31 am

Brynn,

I share the same symptoms - my neck has been stiff and sore on and off for a few years, my neuro doesn't know why, see my earlier post
http://www.thisisms.com/ftopict-9038-.html

Others have reported neck issues on this thread
http://www.thisisms.com/ftopict-9495-.html

I read thru some documentation from the vascular dept I'm seeing in February and two of the sympoms of (general) venous insufficiency is pain and soreness... so I think alot of things makes more sense with CCSVI :wink:
Last edited by JohnAm on Sat Jan 09, 2010 9:38 am, edited 1 time in total.
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Postby ClaireParry » Sat Jan 09, 2010 8:31 am

Cece - I find it difficult to get my breath sometimes. I can't take a deep breath and can get light headed. It doesn't help my vertigo.

I was sick and tired of people, including my Neuro, telling me that I was having panic attacks!! No way!!

So with CCSVI and the possibility of being hypoxic - it all falls into place.

I'm glad it's not just me.

Claire
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sore neck

Postby jak7ham9 » Sat Jan 09, 2010 8:37 am

yes i have sore neck most especially on left side where it showed stenosis .Cold purple feet cold hands. intolerant to heat. Caffeine (vasoconstrictor bothers me)
barbara
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Postby ozarkcanoer » Sat Jan 09, 2010 8:53 am

I have the stiff sore neck too. The pain can be very severe. At the same time I have murderous TMJ, headaches and pain from just under my skull at the back of my neck that radiates down my neck and onto my shoulders. Just yesterday I went through a terrible episode of all this pain. My neuro prescribed vicodin. It helps but the pain never really goes away. And now I am a druggie.

Wouldn't it be wonderful if "the procedure" would clear this up ?? :D

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Postby thisisalex » Sat Jan 09, 2010 9:17 am

for me not the neck, but the muscles of the shoulder (close to the spine) is painful sometimes...

and what about poor posture (forward head) ? It could cause the jugular to deteriorate... I have this since my early childhood... anyone?

alex
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Postby Brynn » Sat Jan 09, 2010 10:56 am

This is all really fascinating! Last year, when my feet turned uncomfortably cold, dry and purple, my neurologist sent me to a cardiologist, wanting to eliminate the possibility of a cardiology issue. In retrospect, it was not a cardiology issue but it WAS a VASCULAR issue. My neuro spoke of the MS theory that our bodies no long know how to regulate our body temperature functions. NOW, looking at all of this through CCSVI glasses, perhaps it is all coming together! :o Perhaps these are ALL really vascular issues. Maybe we all need to go to our GP rather than our neuro and pursue VASCULAR investigation, since I bet this collection of speciific symptoms would get us going in that direction....Perhaps the MS discussion is better off NOT being had right now since the MS might be an unfortunate RESULT only and focusing the conversation on vascular issues will keep the GPs from being uncooperative and defensive.. I am going to go see my GP next week, have a vascular converation with him since I would need his help with IR referrals. I had an MRV done last month with my neuro, but I went in unarmed with all of the new protocol information, so it was quite unproductive...My neuro just rolled his eyes and said, "You're fine." I am going to try it again through my GP. This vascular line would be another direction on insurance issue too, I suppose.

Thanks for all of your comments. My sore area is on my left, backside, just below my scull and I was thinking that maybe it feels pretty good in the morning because I have been laying down all night (actually trying IBT, but that is another conversation!) and it gets worse through the day due to stenosis reflux!? I think that when it gets really sore, I am going experiment with watching how I feel after laying down for a rest....WOW! This is such an example of all of us needing to be our own advocates! Exciting possibillities to our world. Take care everyone and thanks so much for all of this insight! It will all make it easier to wait for my Poland trip in September '10. Brynn












last year, when I develop uncomfortably purp
41 years old, dx 1998, current EDSS 6.5
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Flattened Pea Syndrome, lol

Postby Ruthless67 » Sat Jan 09, 2010 12:50 pm

Hi all,

I’ve got another weird thing to throw out. Last year over the 2008 holiday period I noticed these symmetrical round bumps under the skin behind both of my ears. Felt to me sort of like flattened peas and extremely painful when touched. (I’d tell myself, then don‘t touch them!) Then I started to have pain turning my neck and noticed the bumps were now also running up the back of my head. Again symmetrical as they went up the base of the skull for about 2 inches. I mentioned this to my daughter-in-law and she said I should have it checked. Well, I thought, great, and just WHO would I go see for this new development. Needless to say, I waited and after more than a week it went away.
I’m still not sure what that was. I know I’ve had the tender/painful flattened pea experience before, just never had it go up the back of my head that way before. Any thoughts out there?

Lora
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