Sharing Common Symptoms....

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

Postby thornyrose76 » Sat Jan 09, 2010 1:30 pm

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.
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Postby annad » Sat Jan 09, 2010 1:47 pm

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
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Postby leetz » Sat Jan 09, 2010 2:20 pm

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...
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Postby magoo » Sat Jan 09, 2010 2:24 pm

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.
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Postby ozarkcanoer » Sat Jan 09, 2010 2:26 pm

magoo,

Did all your collaterals disappear/atrophy after your treatment ?

ozarkcanoer
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Postby annad » Sat Jan 09, 2010 2:29 pm

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
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Postby magoo » Sat Jan 09, 2010 2:30 pm

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.
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Re: Flattened Pea Syndrome, lol

Postby Johnson » Sat Jan 09, 2010 2:41 pm

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
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common symptoms

Postby elyse_peace » Sat Jan 09, 2010 8:24 pm

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.
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Postby Ruthless67 » Sat Jan 09, 2010 8:42 pm

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
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Postby NormB » Sat Jan 09, 2010 8:58 pm

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
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Postby Cece » Sat Jan 09, 2010 9:11 pm

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.
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anothr symptom

Postby jak7ham9 » Sun Jan 10, 2010 2:38 pm

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.
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Postby walcat » Sun Jan 10, 2010 11:09 pm

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!) :)
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Postby DippyD » Mon Jan 11, 2010 3:52 am

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
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