This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Thu May 23, 2013 10:42 am

View unanswered posts | View active topics


Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]



Post new topic Reply to topic  Page 2 of 4
  [ 46 posts ]  Go to page Previous  1, 2, 3, 4  Next
  Print view Previous topic | Next topic 
Author Message
thornyrose76
 Post subject:
PostPosted: Sat Jan 09, 2010 1:30 pm 
Offline
Family Elder
User avatar

Joined: Mon Nov 23, 2009 4:00 pm
Posts: 462
Off and on since I was a teenager (I'm 33) I have, yes, had this prob, stiff sore neck, in some instance it has been quite severe.
Top
 Profile  
 
annad
 Post subject:
PostPosted: Sat Jan 09, 2010 1:47 pm 
Offline
Family Elder
User avatar

Joined: Sat Nov 21, 2009 4:00 pm
Posts: 207
Location: Ontario, Canada
What the hec, here's my stuff thrown into the pile, since childhood. . . cold hands, cold feet (double socked as I type) and cold nose! I go for physio for my sore neck and shoulders but I often use a cane so maybe that's why?? Bad posture? Who knows.
a
Top
 Profile  
 
leetz
 Post subject: annad
PostPosted: Sat Jan 09, 2010 2:20 pm 
Offline
Family Elder
User avatar

Joined: Tue Oct 06, 2009 3:00 pm
Posts: 287
Doesn't it all make sense???Me? Hot hands and purple feet an obvios vascular problem...also palpations(abnormal hear rhythm....just curious anyone else???

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...
Top
 Profile  
 
magoo
 Post subject:
PostPosted: Sat Jan 09, 2010 2:24 pm 
Offline
Family Elder
User avatar

Joined: Thu Sep 10, 2009 3:00 pm
Posts: 550
Location: Charlotte, NC
Terrible pain on the right side of my neck beginning at the base of my skull and leading to my shoulder was one of my earliest complaints. I had it for 6 years and tried a number of therapies and drugs to help with the pain. None very successful. After the surgery, it disappeared. Dr. Dake did not understand it, but we speculated about the collaterals possibly putting pressure on the nerves in the neck.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
Top
 Profile  
 
ozarkcanoer
 Post subject:
PostPosted: Sat Jan 09, 2010 2:26 pm 
Offline
Family Elder
User avatar

Joined: Thu Oct 15, 2009 3:00 pm
Posts: 1273
Location: St. Louis, Missouri
magoo,

Did all your collaterals disappear/atrophy after your treatment ?

ozarkcanoer
Top
 Profile  
 
annad
 Post subject:
PostPosted: Sat Jan 09, 2010 2:29 pm 
Offline
Family Elder
User avatar

Joined: Sat Nov 21, 2009 4:00 pm
Posts: 207
Location: Ontario, Canada
leetz, I do too (heart) but not diagnosed with anything. I find I have to catch my breath once in a while.
magoo, I have sharp pains on my shoulders once in a while especially when my arms fall to the side without them being supported with an arm rest.
I have a hard time getting warm too. I'm still freezing. . .hands, feet and nose
Top
 Profile  
 
magoo
 Post subject:
PostPosted: Sat Jan 09, 2010 2:30 pm 
Offline
Family Elder
User avatar

Joined: Thu Sep 10, 2009 3:00 pm
Posts: 550
Location: Charlotte, NC
YES! They most certainly did!!!

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
Top
 Profile  
 
Johnson
PostPosted: Sat Jan 09, 2010 2:41 pm 
Offline
Family Elder
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 979
Location: Ucluluet, BC
Ruthless67 wrote:
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


That sounds like they could be sebaceous cysts (infected sebaceous glands). Don't prod at them (even though you probably don't, because they hurt). I had terrible cysts behind my ears, which were removed (not totally effectively) by a plastic surgeon. There is a lot of lymph flow in the neck, and back of head.

_________________
My name is not really Johnson. MSed up since 1993
Top
 Profile  
 
elyse_peace
 Post subject: common symptoms
PostPosted: Sat Jan 09, 2010 8:24 pm 
Offline
Family Elder
User avatar

Joined: Thu Dec 31, 2009 4:00 pm
Posts: 172
Location: Putnam, NY
Good evening, everybody.
To Ruthless67: the cold, waxy, white/yellow situation has a name, which is Reynaud's Syndrome.
To Ozarkcanoer: the buzzing that goes down your back when you bend your head forward also has a name, which I cannot remember at this moment.
I am finding this conversation riveting. I'm sorry/glad that we all have this commonality. It's kinda lousy, but it's nice to meet you all.
Top
 Profile  
 
Ruthless67
 Post subject: Thanks
PostPosted: Sat Jan 09, 2010 8:42 pm 
Offline
Family Elder
User avatar

Joined: Tue Oct 27, 2009 4:00 pm
Posts: 422
Location: Montana, USA
Hi Johnson,

You know, somewhere in the back of my mind I rolled that thought around at the time. That maybe I was fighting off some infection and my lymph nodes were involved in it. So I hope they did a good job, cause I’d prefer that not to happen again.

elyse_peace,

I looked up Reynaud's Syndrome and think I’m spot on for it by all my symptoms.

Lora
Top
 Profile  
 
NormB
 Post subject:
PostPosted: Sat Jan 09, 2010 8:58 pm 
Offline
Family Member
User avatar

Joined: Thu Jan 07, 2010 4:00 pm
Posts: 95
Location: Near Ottawa Canada
Hi everyone, new here,

"To Ozarkcanoer: the buzzing that goes down your back when you bend your head forward also has a name, which I cannot remember at this moment. "


It is called L'hermittes syndrome which my gp said when I first saw him for tingling hands back in '92. After many tests was diagnozed with probable ms which turned to sp in '05.

Nice to meet

Norm
Top
 Profile  
 
Cece
 Post subject:
PostPosted: Sat Jan 09, 2010 9:11 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8508
ClaireParry wrote:
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!!


Yes - I remember being offended when a friend told me that she had panic attacks and what I was describing was absolutely a panic attack, because there's no panic or anxiety involved...just the feeling like I'm not getting enough breath.
Top
 Profile  
 
jak7ham9
 Post subject: anothr symptom
PostPosted: Sun Jan 10, 2010 2:38 pm 
Offline
Family Member
User avatar

Joined: Mon Oct 29, 2007 4:00 pm
Posts: 90
I have also noticed small pupils . the pupils do do dialate normally like healthier people such as now I am looking at my children and their pupils are dilated mine are tiny.
Top
 Profile  
 
walcat
 Post subject:
PostPosted: Sun Jan 10, 2010 11:09 pm 
Offline
Family Member
User avatar

Joined: Sat Dec 12, 2009 4:00 pm
Posts: 25
Location: Idaho, USA
Hi Everyone,

This is my first post, although I've been following for a couple months. I also have cold hands and feet. My feet get so ice cold when I lay down, I can't fall asleep at night. I also have a stiff neck that last all day. I wake up in pain and my feet are extremely numb and tingling. It goes away after about 15 min. after I get up. I also have low blood pressure, and have had the tingling down my spine in the past. I'm also always cold, I use to tell people I have poor circulation (who knew!) :)
Top
 Profile  
 
DippyD
 Post subject:
PostPosted: Mon Jan 11, 2010 3:52 am 
Offline
Getting to Know You...
User avatar

Joined: Fri Oct 23, 2009 3:00 pm
Posts: 16
Location: UK
Eh up!!

Count me in too on the cold hands and feet - have always, since a child, been on the receiving end of the "cold hands, warm heart" greeting.. and 'get those cold feet off me'!!!...
Prone to dizzy spells.
Stiff and sore neck - absolutely! Until I learnt of CCSVI, I assumed it was poor posture. I'm interested to see whether, when tested next week (!), I display any abnormality at the specific site (lower, rear, left base of skull).
L'hermittes sign - yes;
Shortness of breath and palpitations also.. It's strangely reassuring to hear that I'm not alone, as it's felt like I'm going mad - having what feels like a panic attack when I'm calmly restful in bed...

CCSVI seems to make sense of so much, not least the fatigue and brain fog.


x
Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 2 of 4
  [ 46 posts ]  Go to page Previous  1, 2, 3, 4  Next

Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]

Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Common Symptoms

PCakes

11

1365

Mon Mar 08, 2010 10:26 pm

lilsis View the latest post

There are no new unread posts for this topic. My CCSVI Theory for common MS Symptoms - need feedback

rssugg

4

1459

Sun Oct 11, 2009 5:25 am

GiCi View the latest post

There are no new unread posts for this topic. Sharing the creativity of the CCSVI community

bestadmom

14

1228

Thu Jul 28, 2011 6:44 am

1eye View the latest post

There are no new unread posts for this topic. BECOMING A COMMON STORY

[ Go to pageGo to page: 1, 2 ]

dania

18

2014

Tue May 17, 2011 5:42 pm

1eye View the latest post

There are no new unread posts for this topic. My right jug is twice as wide as my left. Normal? Common?

ndwannabe

4

935

Mon Apr 12, 2010 3:35 pm

ndwannabe View the latest post

 


Who is online

Users browsing this forum: No registered users

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: