CCSVI and CCVBP
- uprightdoc
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Re: CCSVI and CCVBP
Hello Robert,
I don't recall seeing lesions in the cord but it's not necessarily the lesions of the cord that is the problem. It's what caused the lesions in the cord that causes a worse outcome such as PPMS. It's been my experience that they are usually associated with significant pathology of the cervical spine. Spondylosis and stenosis of the cervical spine can affect circulation to the cord. It can also affect the tracts of the cord.
I don't recall seeing lesions in the cord but it's not necessarily the lesions of the cord that is the problem. It's what caused the lesions in the cord that causes a worse outcome such as PPMS. It's been my experience that they are usually associated with significant pathology of the cervical spine. Spondylosis and stenosis of the cervical spine can affect circulation to the cord. It can also affect the tracts of the cord.
- blossom
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Re: CCSVI and CCVBP
Hi Dr. Flanigan, thank you as always. I did know that the plaque was a different animal. But, thought I would mention it because it causes lack of blood flow also.
As far as any cerebral ischemic symptoms out of the following list.
Common symptoms of ischemia of the brain
Symptoms of ischemia of the brain include:
•Abnormal pupil size or nonreactivity to light
•Balance problems, difficulty walking, and falls
•Confusion
•Difficulty with memory, thinking, talking, comprehension, writing or reading
•Dizziness
•Droopy eyelid
•Headache
•Loss of muscle coordination
•Loss of vision or changes in vision
•Nausea with or without vomiting
•Numbness or weakness
•Paralysis
•Vision problems (double vision, blurriness, loss of visual field, sudden blindness)
•Weakness (loss of strength
.
Of course I have numbness or weakness, paralysis. I have noticed through the years that occasionally my left eyelid will be a tad slower than the right. As far as headaches since this all started. I will get a radiating gnawing pain starting at the base of the skull moving upward. Positioning stops that. My extremities change color from dark purple to normal to bright red. From normal to cold to hot. A certain way. I am sitting in the hospital bed, my face and nose will be like ice. Again, positioning, fixes that.
As far as any cerebral ischemic symptoms out of the following list.
Common symptoms of ischemia of the brain
Symptoms of ischemia of the brain include:
•Abnormal pupil size or nonreactivity to light
•Balance problems, difficulty walking, and falls
•Confusion
•Difficulty with memory, thinking, talking, comprehension, writing or reading
•Dizziness
•Droopy eyelid
•Headache
•Loss of muscle coordination
•Loss of vision or changes in vision
•Nausea with or without vomiting
•Numbness or weakness
•Paralysis
•Vision problems (double vision, blurriness, loss of visual field, sudden blindness)
•Weakness (loss of strength
.
Of course I have numbness or weakness, paralysis. I have noticed through the years that occasionally my left eyelid will be a tad slower than the right. As far as headaches since this all started. I will get a radiating gnawing pain starting at the base of the skull moving upward. Positioning stops that. My extremities change color from dark purple to normal to bright red. From normal to cold to hot. A certain way. I am sitting in the hospital bed, my face and nose will be like ice. Again, positioning, fixes that.
- uprightdoc
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Re: CCSVI and CCVBP
Hello Blossom,
Your numbness and weakness aren't due to the plaque in your carotid artery or VBAI, at least not directly. The sluggish eyelid and headaches aren't necessarily signs of ischemia either. Changing positions also relieves musculoskeletal stresses that can cause headaches. The circulatory changes in skin color in your extremities is most likely due to dysautonomia. You may be affecting peripheral circulation to the face by changing head position but it is most likely not caused by the carotid plaque, and definitely not VBAI.
Your numbness and weakness aren't due to the plaque in your carotid artery or VBAI, at least not directly. The sluggish eyelid and headaches aren't necessarily signs of ischemia either. Changing positions also relieves musculoskeletal stresses that can cause headaches. The circulatory changes in skin color in your extremities is most likely due to dysautonomia. You may be affecting peripheral circulation to the face by changing head position but it is most likely not caused by the carotid plaque, and definitely not VBAI.
- blossom
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Re: CCSVI and CCVBP
NZer1 wrote:Hi Blossom, I assume its good to have something to focus on and concider the possibility/probability that the finding is linked to the long of symptoms we have.
I have been looking at our health challenges from a different angle than many and I believe there are probably 'reasons' for the vascular issues that are being found.
The insights that there are malformations, lesions and so forth is only part of the problem, my thinking goes into why are these issues occurring. And more importantly how are researchers looking at the 'whole picture' rather than what they know or what they can make money from.
My personal example of finding that I have intracellular bacterial infections of CPn and mycoplasma lead me on a journey of truth seeking.
I have put an article/paper link that appeared in my news feed the same day as your posting above, co-incidence or directional indicator?
http://www.fmtlc.com/images/chronic_dis.pdf
Regards all,
Nigel
hi nizer, as far as researchers looking at the whole picture . It is best. We don't hold our breath. There are a few that are looking outside the box, but not near enough. If we could clone Dr. Flanigan and a few others, we might have a fighting chance. But these illnesses and symptoms we have are big business. Business goes where the money is. And that is drugs and keeping us sick.
Take care
- blossom
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Re: CCSVI and CCVBP
Dr. Flanigan, as always, I will go to my grave believing the injuries to my spine and the Spurs, etc., brought all this on. Due to it, never being looked at that way by mainstream medicine and ignored. I am at the point I am. At this point in all these years of continued stress on the spine. I wonder if there is any hope left. I want to think so. But – –
my PCP referred me to a neurosurgeon. He had me get cervical x-rays. He saw nothing in his view that would be causing my symptoms – why am I not shocked. He wants me to get more MRIs of brain thoracic and I don't know what all and I think some more x-rays. He also wants me to see a neurologist. He knows. – am i going to go on the mainstream medicine merry-go-round again?? – just not feeling it. I may get my MRIs etc. done if for no other reason but to have you take a look. At least the guy acted. Okay and was not a smart ass.
As 68 years old. I'm not surprised that I have plaque on the arteries. But that is another issue.
Thanks again
my PCP referred me to a neurosurgeon. He had me get cervical x-rays. He saw nothing in his view that would be causing my symptoms – why am I not shocked. He wants me to get more MRIs of brain thoracic and I don't know what all and I think some more x-rays. He also wants me to see a neurologist. He knows. – am i going to go on the mainstream medicine merry-go-round again?? – just not feeling it. I may get my MRIs etc. done if for no other reason but to have you take a look. At least the guy acted. Okay and was not a smart ass.
As 68 years old. I'm not surprised that I have plaque on the arteries. But that is another issue.
Thanks again
Re: CCSVI and CCVBP
uprightdoc wrote:Hello Robert,
I don't recall seeing lesions in the cord but it's not necessarily the lesions of the cord that is the problem. It's what caused the lesions in the cord that causes a worse outcome such as PPMS. It's been my experience that they are usually associated with significant pathology of the cervical spine. Spondylosis and stenosis of the cervical spine can affect circulation to the cord. It can also affect the tracts of the cord.
Thx doc.
It is just that ppms should show lesions in the spine, and i look more like rrms....
I will ask my neuro for his opinion
- uprightdoc
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Re: CCSVI and CCVBP
Blossom,
An upright and Cine MRI would clearly show obstruction to venous blood and CSF flow. Considering the size of the spur it has to be blocking blood flow through the vertebral veins in the epidural space. As I have said many time, according to neurosurgeon Dr. Wise Young, an expert on traumatic cord injuries, venous hypertension in the vertebral veins is one of the most overlookded causes of chronic ischemia (decreased arterial flow) and subsequent degeneration of the cord. I suspect that the spurs are also affecting CSF flow in the subarachnoid space due to faulty hydraulics. The faulty craniospinal hydrodynamics (hydraulics) are affecting the long motor tracts of the cord which are across from the spur and faulty flow.
Have the neurologist consult with Dr. Raymond Damadian to get his opinion on the possible role of spondylosis and stenosis in faulty craniospinal hydrodynamics.
An upright and Cine MRI would clearly show obstruction to venous blood and CSF flow. Considering the size of the spur it has to be blocking blood flow through the vertebral veins in the epidural space. As I have said many time, according to neurosurgeon Dr. Wise Young, an expert on traumatic cord injuries, venous hypertension in the vertebral veins is one of the most overlookded causes of chronic ischemia (decreased arterial flow) and subsequent degeneration of the cord. I suspect that the spurs are also affecting CSF flow in the subarachnoid space due to faulty hydraulics. The faulty craniospinal hydrodynamics (hydraulics) are affecting the long motor tracts of the cord which are across from the spur and faulty flow.
Have the neurologist consult with Dr. Raymond Damadian to get his opinion on the possible role of spondylosis and stenosis in faulty craniospinal hydrodynamics.
Re: CCSVI and CCVBP
Doc,
Have you heard anything about the studyresults of dr damadian with the 8 ms patients and bad csf pulsation
Have you heard anything about the studyresults of dr damadian with the 8 ms patients and bad csf pulsation
- uprightdoc
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Re: CCSVI and CCVBP
Robert,
No I haven't heard anything further about Dr. Damadian's study of MS patients and blockage of CSF flow in the craniocervical junction. What they are studying, however, is what I started looking into thirty years ago. Upright Cine MRI is simply validating my theory. It's just the tip of the iceberg. My next book will cover far more conditions related to faulty craniospinal hydrodynamics including the cord and childhood conditions. Hopefully it will stimulate further research and better non-surgical and surgical treatments, as well as prevention.
No I haven't heard anything further about Dr. Damadian's study of MS patients and blockage of CSF flow in the craniocervical junction. What they are studying, however, is what I started looking into thirty years ago. Upright Cine MRI is simply validating my theory. It's just the tip of the iceberg. My next book will cover far more conditions related to faulty craniospinal hydrodynamics including the cord and childhood conditions. Hopefully it will stimulate further research and better non-surgical and surgical treatments, as well as prevention.
- uprightdoc
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Re: CCSVI and CCVBP
With permission I am posting the following question that was sent to me PM from CR....
.... " I came across your posts and was wondering if a survey has ever been conducted to ask how many patients Dx with MS have been on Iron Supplements at some point in life? Any light u can shed on this would be great. I have been searching for information to no avail, but findings on the effects of iron reduction therapy are rather interesting in patients with MS. Curious if supplements of iron have been linked in some cases of MS. Mother Dx with MS after 15 years of iron supplementation for low iron. Her situation seems to coincide with ccsvi and I am researching but I am no doctor. The lesions on her brain and spinal cord, paralysis from waste down. She is bedridden in a nursing home."
.... " I came across your posts and was wondering if a survey has ever been conducted to ask how many patients Dx with MS have been on Iron Supplements at some point in life? Any light u can shed on this would be great. I have been searching for information to no avail, but findings on the effects of iron reduction therapy are rather interesting in patients with MS. Curious if supplements of iron have been linked in some cases of MS. Mother Dx with MS after 15 years of iron supplementation for low iron. Her situation seems to coincide with ccsvi and I am researching but I am no doctor. The lesions on her brain and spinal cord, paralysis from waste down. She is bedridden in a nursing home."
- uprightdoc
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Re: CCSVI and CCVBP
Hello CR,
Excess iron can hasten cardiovascular and neurodegenerative conditions. As an aside, it was once suspected that menstruation may provide some protection against excess iron accumulation and cardiovascular degeneration, which gives females a leg-up on males in stalling certain degenerative processes. After menopause they start to catch up to males. It was suggeted that blood donations may similarly help eliminate excess iron in seniors.
It's my opinion that heavy metals, toxins, bacteria, viruses and metabolic wastes can accumulate (aggregate) due to sluggish circulation and CSF flow. Protein aggregation diseases include tauopathies such as Alzheimer's.
Instead of accumulated iron being the cause, I suspect that your mother may have an anemia similar to Thalassimia due to the her low iron count and lesions in the brain and cord.
Excess iron can hasten cardiovascular and neurodegenerative conditions. As an aside, it was once suspected that menstruation may provide some protection against excess iron accumulation and cardiovascular degeneration, which gives females a leg-up on males in stalling certain degenerative processes. After menopause they start to catch up to males. It was suggeted that blood donations may similarly help eliminate excess iron in seniors.
It's my opinion that heavy metals, toxins, bacteria, viruses and metabolic wastes can accumulate (aggregate) due to sluggish circulation and CSF flow. Protein aggregation diseases include tauopathies such as Alzheimer's.
Instead of accumulated iron being the cause, I suspect that your mother may have an anemia similar to Thalassimia due to the her low iron count and lesions in the brain and cord.
Re: CCSVI and CCVBP
Thank you for the information. I wanted to make mention of a few things that stick out in my mind regarding the possible connection.
1. The first known case of MS, interesting cause.
2. Most MS patients symptoms calm down during pregnancy, could this be because the fetus is absorbing nutrients in the womb?
3. I believe we as a family suffer from anemia. However I believe it may be Pernicious anemia which ties in with B12 deficiency. But is also dangerous when given iron supplements as our bodies can't process the iron correctly causing the build up.
4. MS patients cannot donate blood. But donating blood would help the suffering of those fighting this battle. For some odd reason my Mom's good days were after she had huge labs done.
5. My maternal grandmother died 2011 due to dementia and alz.
6. I have had poor health all my life. 32 yrs old and 8 surgeries.
7. I have a 15 year old daughter starting to display symptoms of anemia.
I have a fear of ignorant doctors due to the many we all have dealt with.
I may be incorrect but seems like an awful lot of MS patients do not have the best experts in their lives and there seems to be quite a few doctors out there treating anemia with iron supplements completely unaware of the consequences and outcome it may have in the future for those patients. I do hope that something can change as how many millions of family practice physicians are dx anemia versus how many patients are disabled due to "MS symptoms". Like a huge corporation, and there is too much of a breakdown in communication. And unfortunately, the "consumer", the patients and their families are the suffering. I hope that someone will take the time to make a connection between the basis that iron overload is a possible cause for some cases, no one can deny that there isn't one.. at least no one on the losing end.
Also, I would like your opinion if I may get it on Iron reduction therapy for MS:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3906635/
I am sorry to sound rude and it is in no way directed towards you. I am just passionate about this topic.
Thank you and God Bless
Christina
1. The first known case of MS, interesting cause.
2. Most MS patients symptoms calm down during pregnancy, could this be because the fetus is absorbing nutrients in the womb?
3. I believe we as a family suffer from anemia. However I believe it may be Pernicious anemia which ties in with B12 deficiency. But is also dangerous when given iron supplements as our bodies can't process the iron correctly causing the build up.
4. MS patients cannot donate blood. But donating blood would help the suffering of those fighting this battle. For some odd reason my Mom's good days were after she had huge labs done.
5. My maternal grandmother died 2011 due to dementia and alz.
6. I have had poor health all my life. 32 yrs old and 8 surgeries.
7. I have a 15 year old daughter starting to display symptoms of anemia.
I have a fear of ignorant doctors due to the many we all have dealt with.
I may be incorrect but seems like an awful lot of MS patients do not have the best experts in their lives and there seems to be quite a few doctors out there treating anemia with iron supplements completely unaware of the consequences and outcome it may have in the future for those patients. I do hope that something can change as how many millions of family practice physicians are dx anemia versus how many patients are disabled due to "MS symptoms". Like a huge corporation, and there is too much of a breakdown in communication. And unfortunately, the "consumer", the patients and their families are the suffering. I hope that someone will take the time to make a connection between the basis that iron overload is a possible cause for some cases, no one can deny that there isn't one.. at least no one on the losing end.
Also, I would like your opinion if I may get it on Iron reduction therapy for MS:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3906635/
I am sorry to sound rude and it is in no way directed towards you. I am just passionate about this topic.
Thank you and God Bless
Christina
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Re: CCSVI and CCVBP
Hi Dr. Flanigan, if you recall my history, when I saw Pittsburgh had an upright MRI back in and around 2006 I beat feet. There hoping it would show what I was trying to get across to the doctors. Of course I did not know what I know today. I only knew and still, KNOW that positioning means a lot in my case. This was called an open standing MRI. Unfortunately, they did not pad me in and the pictures were not too good. Besides, anything I said or did fell on deaf ears.
You would think this article I found on the fonar, Dr.damadian Dr. Rosa and this football players injuries and the help he received from them would make front-page news. But no way.
Do you think I have a chance that my doctors would go for this? I guess I can see. Is Dr.damadian , even reachable by someone like me? Are you aware of any neurosurgeons that have shown an interest? My dream team – Dr. Flanigan advising – using Fonar – a great neurosurgeon – then Dr. Flanigan fine-tuning afterwards.
http://www.fonar.com/news/052114.htm
m.espn.go.com/nfl/story?storyId=
You would think this article I found on the fonar, Dr.damadian Dr. Rosa and this football players injuries and the help he received from them would make front-page news. But no way.
Do you think I have a chance that my doctors would go for this? I guess I can see. Is Dr.damadian , even reachable by someone like me? Are you aware of any neurosurgeons that have shown an interest? My dream team – Dr. Flanigan advising – using Fonar – a great neurosurgeon – then Dr. Flanigan fine-tuning afterwards.
http://www.fonar.com/news/052114.htm
m.espn.go.com/nfl/story?storyId=
Re: CCSVI and CCVBP
Hello Blossom - (I have been absent from ThisisMS for quite sometime -- thought I would chime in on Dr. Rosa and Damadian)
You mentioned
http://www.stamfordadvocate.com/sports/ ... 150813.php
http://www.newsday.com/sports/football/ ... -1.9493358
There is quite a lot going on behind the scenes. I will be in NY next week to record an interview with Dr. Rosa -- we will be discussing his new observations in traumatic brain injury and neurological disease. Look for the video on the CCSVI Alliance website http://www.ccsvi.org
Take care,
Sharon
You mentioned
The recovery of Jim McMahon has been on frontpage news --You would think this article I found on the fonar, Dr.damadian Dr. Rosa and this football players injuries and the help he received from them would make front-page news. But no way.
http://www.stamfordadvocate.com/sports/ ... 150813.php
http://www.newsday.com/sports/football/ ... -1.9493358
There is quite a lot going on behind the scenes. I will be in NY next week to record an interview with Dr. Rosa -- we will be discussing his new observations in traumatic brain injury and neurological disease. Look for the video on the CCSVI Alliance website http://www.ccsvi.org
Take care,
Sharon
- uprightdoc
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Re: CCSVI and CCVBP
Hello Christina,
The improvement during pregnancy is most likely due to hormonal changes. Anemia is a complex topic. You usually have to address underlying metabolic issues. Your grandmother's dementia/Alzheimer's could certainly have been brought on by circulatory issues related to anemia. As far as iron reduction therapy is concerned, I wouldn't recommend it unless there were indicators suggesting a possible role. With your personal and family history it is certainly a consideration. From my perspective, I would try to get to the bottom and find the cause(s) of the anemia that runs in the family. I suspect you may have digestive/metabolic issues.
The links below are to a condition called subacute combined degeneration of the cord.
http://emedicine.medscape.com/article/1152670-overview
http://www.nlm.nih.gov/medlineplus/ency ... 000723.htm
http://en.wikipedia.org/wiki/Subacute_c ... pinal_cord
The improvement during pregnancy is most likely due to hormonal changes. Anemia is a complex topic. You usually have to address underlying metabolic issues. Your grandmother's dementia/Alzheimer's could certainly have been brought on by circulatory issues related to anemia. As far as iron reduction therapy is concerned, I wouldn't recommend it unless there were indicators suggesting a possible role. With your personal and family history it is certainly a consideration. From my perspective, I would try to get to the bottom and find the cause(s) of the anemia that runs in the family. I suspect you may have digestive/metabolic issues.
The links below are to a condition called subacute combined degeneration of the cord.
http://emedicine.medscape.com/article/1152670-overview
http://www.nlm.nih.gov/medlineplus/ency ... 000723.htm
http://en.wikipedia.org/wiki/Subacute_c ... pinal_cord