Basic Signs/Symptoms

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

Basic Signs/Symptoms

Postby lindabp » Mon Mar 29, 2010 8:29 am

I have read all 19 pages on this forum and other CCSVI sites - If this answer is out there, I've missed it. So at the risk of being repetitive, I'm curious: What are the basic signs/symptoms of someone with CCSVI or a similar venous diagnosis? Taking MS out of the equation completely, what clinical symptoms are likely to be exhibited by a person whose IJV is constricted, blocked, twisted, malformed, etc.?

Is there perhaps a link to a site that talks about this in general?

Thank you for your time.
Cheers,<br />Lindabp<br />
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Postby Cece » Mon Mar 29, 2010 11:56 am

headaches, neck pain, unexplainable fatigue, swelling of the "ipsilateral" arm (on the same side as the stenosis), cold hands, cold feet, foggy thinking, heat intolerance...this is not a perfect or proven list, more anecdotal...some may cross over with m.s. symptoms as well where it's hard to say what's caused by CCSVI and what's caused by m.s. but the improvements in fatigue and clear thinking and heat tolerance after the procedure make me think those in particular are caused by the blocked blood flow...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Merlyn » Mon Mar 29, 2010 12:10 pm

Well, given that 29% of healthy controls have the same stenosis, but without any clear symptoms, you have asked the million dollar question. Symptoms of iron overload? I have about 30 of them...




www.hemochromatosis-info.com




Hemochromatosis Iron

According to the Centers for Disease Control (CDC), these individuals have a gene mutation that can cause iron overload, which can lead to hemochromatosis -- a disorder that can result in organ damage due to significant and excessive absorption and storage of iron. People of European descent are most likely to be in this risk group.


What Are the Symptoms of Iron Overload or Hemochromatosis?
While there is no distinct set of symptoms that indicate iron overload, early symptoms of iron overload or hemochromatosis include:

•Fatigue
•Weakness
•Weight loss
•Joint pain
•Abdominal pain
As iron overload progresses, patients often experience:


•Arthritis
•Symptoms of Gonadal failure
•Dyspnea, or shortness of breath
Certain conditions are associated with the advanced stages of hemochromatosis. These conditions include:


•Arthritis
•Abnormal liver function
•Glucose intolerance
•Diabetes
•Severe fatigue
•Hypopituitarism
•Hypogonadism
•Cardiomyopathy and arrhythmia
•Liver cirrhosis
•Liver cancer
•Heart failure
•Gray or bronze skin pigmentation
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Postby AlmostClever » Mon Mar 29, 2010 12:20 pm

Cece wrote:headaches, neck pain, unexplainable fatigue, swelling of the "ipsilateral" arm (on the same side as the stenosis)...


Interesting - my optic nueritis is on the same as my weak leg! Never even connected this before...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Merlyn » Mon Mar 29, 2010 12:21 pm

http://www.irondisorders.org/iron-overload


Symptoms, signs and diseases resulting from too much iron (iron overload):

■chronic fatigue
■joint pain
■abdominal pain
■liver disease (cirrhosis, liver cancer)
■diabetes mellitus
■irregular heart rhythm
■heart attack or heart failure
■skin color changes (bronze, ashen-gray green)
■loss of period
■loss of interest in sex
■osteoarthritis
■osteoporosis
■hair loss
■enlarged liver or spleen
■impotence
■infertility
■hypogonadism
■hypothyroidism
■hypopituitarism
■depression
■adrenal function problems
■early onset neurodegenerative disease
■elevated blood sugar
■elevated liver enzymes
■elevated iron (serum iron, serum ferritin)
The treatment for iron overload is iron reduction therapy. A person's hemoglobin is key in the physician's decision of iron reduction therapy. If the patient's hemoglobin level is sufficient to tolerate blood removal (phlebotomy), the doctor can provide either an order for therapeutic phlebotomies or can recommend that a patient routinely donate blood. When a patient's hemoglobin is too low for phlebotomy, iron reduction will likely require be iron-chelation. In some situations the physician may use a combination of these two therapies.
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Postby lindabp » Mon Mar 29, 2010 12:21 pm

Thanks for your replies,

Funny - I NEVER get the weight loss symptom - why's that? :)

I was curious if there were others. My entire adult life, when I exercise, I don't sweat, but my face becomes very hot and red, often purple. I've had CT scans for other things over the years - my sinus cavities are always full even though I have no sinus problems at the time of the scan or ever actually. BP has always been low - nurses would ask if I was a long distance runner - trust me, I'm not. I get light headed very easily.

Thanks again,
Cheers,<br />Lindabp<br />
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Postby Cece » Mon Mar 29, 2010 1:10 pm

low blood pressure has definitely been discussed here and so has having a red face...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby eric593 » Mon Mar 29, 2010 1:24 pm

But wouldn't symptoms of CCSVI necessarily have to also be MS symptoms since CCSVI is predominantly found in those with MS? So, MSer's should have the symptom frequently too. It may not be a neurological symptom (i.e., sign of demyelination), but it should show up in most MSer's. The only one I can see that is more frequently seen in MSer's than in the regular population is fatigue. I think cold feet in MSer's has been more readily explained by impaired mobility.

That's why I really question almost any of the symptoms listed (especially those on the iron overload list) because if they don't show up in the majority of people with MS, then they likely aren't associated with CCSVI either. At this point, I think demyelination might be the only association found, for, as Dr. Sclafani says, if you're diagnosed with MS, chances are, you have CCSI.
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Postby mshusband » Mon Mar 29, 2010 1:29 pm

Can we get Merlyn an Iron Overload forum? This is supposed to be CCSVI forum ... and he hijacks every thread (similar to andrewkfletcher with his IBT theory).

I'm not complaining - Merlyn - I believe there is something to the iron theory as it relates to MS (but it's not everything - at least in my opinion) ... but it's out of hand your posting about it.

Are you a doctor for an Iron center or something?

Is there a service you provide for your iron theory?
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Postby Bethr » Mon Mar 29, 2010 1:45 pm

I would love to have our own section for iron metabolism, I think it is deserved, and I agree, it does not fit in well here. Mods, anything you can do, we need our own section.
But the crossover is there in symptoms, it can't be denied.
When I started to be de-ironed, I could also tolerate heat again and being out in the sun, and began to sweat again, and most importantly got rid of my severe fatigue and daytime sleeping. It was as instant as is CCSVI, probably moreso.
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Postby Cece » Mon Mar 29, 2010 4:09 pm

eric593 wrote:But wouldn't symptoms of CCSVI necessarily have to also be MS symptoms since CCSVI is predominantly found in those with MS?


I don't know, I think it's possible to separate out the two. Put the vascular symptoms under the CCSVI umbrella and the neurological damage and autoimmune involvement (even if initially caused by the CCSVI blockages) under the M.S. umbrella. Thinking this way, the fatigue could be a result of the CCSVI (not enough oxygen and slowed blood flow in the brain) and a result of the neurological damage and a result of inflammation in the brain. It's a three-for.

Heat intolerance is also maybe not a universal m.s. symptom, but still a common one.

I have also latched onto the cold feet repetition, it's practially a literary theme running through everyone's CCSVI treatment reports. Granted I am at my computer, on a mandatory rest period, with differing degrees of freezing cold feet every time I read about it. In myself, it's not limited-mobility-related, for which I am grateful. Some scientific studies on the matter would be good! Although by the time the studies are done, I hope my CCSVI is long since fixed.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Symptoms

Postby Rosegirl » Mon Mar 29, 2010 6:13 pm

Several posts have mentioned that after exercising, their faces stay very red for an extended period of time.

Another thing that seems odd is that a couple of people have said that after their procedure they were able to sweat again. That one caught my attention because, in the old days when I went to exercise classes, everyone would be soaking wet except me.

Anyone else experience either of these things?
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Postby msgator » Mon Mar 29, 2010 6:39 pm

I am so glad people are mentioning the lack of sweating. I have always gotten a really red face when exercising, but used to sweat. Now I don't. To the point that I have been able to stop using deoderant. (I did a little test, to see if at least my armpits would sweat, but nothing, even while doing 20 minutes on a stairmaster, only level three, but still)


Does anyone have any answers???
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby eric593 » Mon Mar 29, 2010 6:47 pm

Cece wrote:Heat intolerance is also maybe not a universal m.s. symptom, but still a common one.



What do you mean by 'heat intolerance'?

I agree, that is a symptom commonly seen in MS that can't exclusively be attributed to a neurological cause.

I have never had this red face or sweating problem. I do have cold feet but it's only developed in the past 6 months or so when I haven't been as active. I've had MS for 25 or so years.
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Postby cheerleader » Mon Mar 29, 2010 7:29 pm

Interesting question...the answers are still unknown.

Many symptoms we have considered part of MS, may in fact turn out to be due to venous insufficiency.

In Jeff, the symptoms he thought were MS, which Dr. Dake now believes may have been venous insufficiency were:
depression, fatigue, sleep apnea, spasms, heat intolerance
These are now gone since his stenting procedure, and these symptoms remit in many who have their venous stenosis opened.
Jeff still has neuropathic pain and can get worn down, probably due to axonal damage.

Now, for a bit of history-When I started the CCSVI thread back in December 2008, I first posted in the general thread...I didn't high jack anyone else's topic. A group of us then asked for our own forum, and the moderators started the CCSVI forum.
Merlyn, please ask the administrators for your own thread. Hereditary hemochromatosis and MS are in exact inverse proportion as far as who is diagnosed-
signs of the condition (HH) usually appear between ages 40 and 60, when iron in the body has reached damaging levels. Women are less likely to develop symptoms of iron buildup than men, probably due to normal iron loss during menstruation.

link to HH facts

MS is diagnosed mostly in young women. Young women are also more often diagnosed with venous insufficiency. You may have this, but it doesn't belong on the CCSVI forum. Jimmy...please give this guy his own hemochromatosis forum...thanks!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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