CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 15, 2013 1:08 pm

Myelin can be permanently damaged. In a perfect world radiologists can determine whether lesions are old or new by the tissue density (amount of water) in the lesion which show as hyperintense, hypointense or isointense. Lesions aren't always that clear cut however. They can be signs of inflammation and edema and not necessarily permanent sclerotic scar tissue. Changing positions changes tension on the cord and the neurovascular outlets in the skull, spine and pelvis.

It must be something in the water up there that you don't feel pain. Maybe it's the temperature.
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Re: CCSVI and CCVBP

Postby THX1138 » Mon Jul 15, 2013 1:39 pm

Dear Dr. Michael Flanagan, do the following experience(s) sound like CCSVI or CCVBP to you?

I would really appreciate any comments you may have on this.

Thank You,
THX1138




THX1138:
Quote:
After the first time I went for a walk during a strong niacin flush (meaning a flush that goes all the way down to my toes), I started searching the net to find out why the flush transformed my walking and I found someone else who described a very similar experience:

At about.com http://ms.about.com/b/2009/12/01/ccsvi- ... erosis.htm I found this:

(11) Hazel Young says:
Twenty-five years ago I was diagnosed with primary progressive MS. A year later I had all invisible signs of multiple sclerosis and I was walking with a cane. It often felt as if I were walking underwater. Going up and down stairs was almost impossible. In desperation, I began taking massive doses of vitamins. One of these was niacin.

Upon taking the niacin I would develop the “niacin flush” which would last for about twenty minutes. As I felt the blood rushing throughout my body, for that glorious twenty minutes, I would feel the MS lifting from my body. I would run up and down stairs, stairs I couldn‘t navigate five minutes before. I would grab my husband’s hand and we would walk around the block (yes, without my cane). We would put on our favourite record and dance like we hadn’t done in more than a year. Then the flush would disappear and the MS would take over my body once again.

No doctor has ever been able to explain why the niacin flush had this effect on me, but I always knew it had something to do with blood flow. As this niacin website states: “Niacin causes the capillaries in your body to get bigger…capillaries are the main way for your body to rid itself of toxins.”
http://www.mens-total-fitness.com/niacin-flush.html

When I watched Dr. Zamboni’s Liberation Treatment on television it finally felt like maybe there was a connection.
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Re: CCSVI and CCVBP

Postby dania » Mon Jul 15, 2013 2:35 pm

uprightdoc wrote:Myelin can be permanently damaged. In a perfect world radiologists can determine whether lesions are old or new by the tissue density (amount of water) in the lesion which show as hyperintense, hypointense or isointense. Lesions aren't always that clear cut however. They can be signs of inflammation and edema and not necessarily permanent sclerotic scar tissue. Changing positions changes tension on the cord and the neurovascular outlets in the skull, spine and pelvis.

It must be something in the water up there that you don't feel pain. Maybe it's the temperature.

Nothing in the H20. I am an oddity. I do feel pain. It just to have to be excruciating. Not always a plus as it is our warning system that something is wrong. Maybe if I felt pain from my fall or later on in that area I would of had it Xrayed. Broke my elbow in a riding accident, did not realize it until I put weight on that arm.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 15, 2013 2:38 pm

Hello THX1138,
There is definitely a connection. The vasodilatory affect of niacin, however doesn't affect brain circulation so it wouldn't impact the midbrain or basal ganglia, which are major causes of spasticity. On the other hand, it could help relieve peripheral causes of muscle spasms, such as lactic acid and anerobic metabolites by improving blood flow and waste removal. It would also help to decrease the formation of lipid peroxides, oxygen free radicals etc. You may be altering cranial and spinal canal hydrodynamics (fluid mechanics) by way of downstream affects. For example, by increasing peripheral blood flow through blood vessels that supply and drian the spine you may be reducing edema in the spinal canal and thus relieving pressure on the cord. It would be interesting to see your blood work to check for signs of anemia and inflammation, as well as your blood pressure and pulse rate numbers.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 15, 2013 2:48 pm

Some sit down falls don't always cause immediate or even local pain. I have had patients ring their bells and not hurt their butts in sit down falls. Hard slips and falls should always be checked and treated for signs of strains.
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Re: CCSVI and CCVBP

Postby THX1138 » Mon Jul 15, 2013 3:07 pm

Dear Dr. Michael Flanagan, I really appreciate your reply.

I am working on getting the info you are interested in.

Two other things I have found to provide a somewhat similar effect (but weaker) are long, strong magnesium foot soaks and vinpocetine. I have found that vasodilators such as these (and niacin) are what helps me. The results are not anywhere near permanent yet, unfortunately.

Also, the niacin flush and magnesium foot soaks clear my brain fog and pressure (pressure that gets worse the longer I stand.)

Thank You,
THX1138
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Re: CCSVI and CCVBP

Postby THX1138 » Mon Jul 15, 2013 3:24 pm

Dr. Michael Flanagan, in addition to much better walking during the niacin flush, I get energetic and my visual color saturation and clarity improve greatly.

I would appreciate it very much if you were to have a look at my messages - they talk a lot about my experiences with niacin and magnesium.


Thanks again, :-D :!:
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Re: CCSVI and CCVBP

Postby THX1138 » Mon Jul 15, 2013 4:50 pm

uprightdoc wrote:Hello THX1138,
There is definitely a connection. The vasodilatory affect of niacin, however doesn't affect brain circulation so it wouldn't impact the midbrain or basal ganglia, which are major causes of spasticity. On the other hand, it could help relieve peripheral causes of muscle spasms, such as lactic acid and anerobic metabolites by improving blood flow and waste removal. It would also help to decrease the formation of lipid peroxides, oxygen free radicals etc. You may be altering cranial and spinal canal hydrodynamics (fluid mechanics) by way of downstream affects. For example, by increasing peripheral blood flow through blood vessels that supply and drian the spine you may be reducing edema in the spinal canal and thus relieving pressure on the cord. It would be interesting to see your blood work to check for signs of anemia and inflammation, as well as your blood pressure and pulse rate numbers.


Dr. Michael Flanagan, below is the info you are interested in:
Sorry that the results didn't copy/paste well. If you need any clarification, please let me know.


Component Results
Component Standard Range Your Value
WBC 3.4 - 10.7 10**9/L 6.0
RBC 4.20 - 5.90 10**12/L 4.83
HGB 13.0 - 17.0 g/dl 16.2
HCT 37.5 - 51.0 % 47.9
MCV 82.0 - 99.0 fL 99.0
MCH 27.0 - 34.0 pg 33.6
MCHC 32.0 - 35.7 g/dL 33.9
RDW 11.0 - 15.0 % 11.7
PLT 150 - 400 10**9/L 174
General Information
Collected:
12/13/2012 2:58 PM
Resulted:
12/13/2012 3:01 PM


________________________________________________________________________________
______________________________________________________________________________



Test Name Test Date Result Result History Normal Range Laboratory/Caregiver Comments
Hemoglobin
January 21, 2013
15.8 g/dL
Show historical results Show historical results
13.5 - 17.5
Hematocrit
January 21, 2013
45.5 %
Show historical results Show historical results
38.8 - 50.0
Erythrocytes
January 21, 2013
4.87 x10(12)/L
Show historical results Show historical results
4.32 - 5.72
MCV
January 21, 2013
93.4 fL
Show historical results Show historical results
81.2 - 95.1
RBC Distrib Width
January 21, 2013
12.7 %
Show historical results Show historical results
11.8 - 15.6
Leukocytes
January 21, 2013
7.9 x10(9)/L
Show historical results Show historical results
3.5 - 10.5
Platelet Count
January 21, 2013
168 x10(9)/L
Show historical results Show historical results
150 - 450
Neutrophils
January 21, 2013
5.64 x10(9)/L
Show historical results Show historical results
1.70 - 7.00
Lymphocytes
January 21, 2013
1.56 x10(9)/L
Show historical results Show historical results
0.90 - 2.90
Monocytes
January 21, 2013
0.48 x10(9)/L
Show historical results Show historical results
0.30 - 0.90

___________________________________________




Test Name Test Date Result Result History Normal Range Laboratory/Caregiver Comments
Eosinophils
January 21, 2013
0.16 x10(9)/L
Show historical results Show historical results
0.05 - 0.50
Basophils.
January 21, 2013
0.02 x10(9)/L
Show historical results Show historical results
0.00 - 0.30
Vitamin B-12 Assay, S
January 21, 2013
>1400 ng/L This value is above the normal range.
Show historical results Show historical results
180 - 914
Sodium, S
January 21, 2013
143 mmol/L
Show historical results Show historical results
135 - 145
Potassium, S
January 21, 2013
4.5 mmol/L
Show historical results Show historical results
3.6 - 5.2
Creatinine (w/eGFR)
January 21, 2013
0.8 mg/dL
Show historical results Show historical results
0.8 - 1.3
eGFR-Non African American
January 21, 2013
>60 mL/min/BSA
Show historical results Show historical results
>60
eGFR-African American
January 21, 2013
>60 mL/min/BSA
Show historical results Show historical results
>60
Cyclic Citrullinated Peptide Abs
January 21, 2013
<15.6 U
Show historical results Show historical results
<20.0 (Negative)

_____________________________________________________



Test Name Test Date Result Result History Normal Range Laboratory/Caregiver Comments
Antinuclear Ab
January 21, 2013
0.4 U
Show historical results Show historical results
<=1.0 (Negative)
Lyme Disease Screen ELISA
January 21, 2013
- Neg.
Show historical results Show historical results
Negative
Serologic response to B. burgdorferi infection is not detected, but cannot rule out early infection during which low or undetectable antibody levels to B. burgdorferi may be present. If clinically indicated, a new serum specimen should be submitted in 7-14 days.
Magnesium(S)
January 21, 2013
2.1 mg/dL
Show historical results Show historical results
1.7 - 2.3
Copper(S)
January 21, 2013
1.07 mcg/mL
Show historical results Show historical results
0.75-1.45
Zinc(S)
January 21, 2013
0.66 mcg/mL
Show historical results Show historical results
0.66-1.10


Note: The MCV came down nicely to 93.4 with Methylcobalamin injections. Also note that the MCV results are from 2 different labs. Also, MMA was checked and found good.
I have not noticed benefit from the B12, but just from the blood flow efforts.


_________________________________________

Blood pressure and pulse rate numbers:

BP: around 120/75
Pulse: mid 60's/low 70's

_________________________________________

I will add that I am extremely sedentary because of energy and walking problems. Sorry that the results didn't copy/paste well. If you need any clarification, please let me know.

Thank You,
THX1138
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jul 16, 2013 2:23 am

Do you have lesions in the brain or cord?
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Re: CCSVI and CCVBP

Postby dania » Tue Jul 16, 2013 6:49 am

Dr Flanagan, I must thank you so much for teaching me and pointing me in the right direction to understanding what and where my problem lies. Without you, I would still be in the dark. I truly get it. Please keep teaching us. All that you pass on here I copy and paste it to my facebook page so more people become aware you and your theories. WE so appreciate it. I hope more will understand, sooner than later. I can never express my gratitude enough. I wish there were more like you.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jul 16, 2013 7:32 am

Thanks Dania and you're welcome.
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Re: CCSVI and CCVBP

Postby dania » Tue Jul 16, 2013 7:38 am

I will be getting Xrays of my coccyx and pelvic area. But I know my sacroiliac joint has been pulled into an abnormal position. I can feel it with my hand, very obvious.

A twisted pelvis which I believe has been caused by a fall on my coccyx.
Damage to the pelvic muscles is the most frequent cause of this issue. Injured muscles typically tighten and shift in order to protect surrounding structures. If a muscle in or near the pelvis like the sacrum demonstrates this behavior, the tightening will pull on ligaments attached to the pelvic bones and joints. As a result, structures like the sacroiliac joint will be pulled into an abnormal position.

Once this tightening occurs, it will likely remain until the muscle injury has healed, so the pelvis remains in its abnormal position. A disparity in the height of the hip bones when a person is lying down could indicate a potential left to right or right to left pelvis shift. Individuals may experience a front to back or back to front misalignment as well.
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Re: CCSVI and CCVBP

Postby THX1138 » Tue Jul 16, 2013 9:04 am

uprightdoc wrote:Do you have lesions in the brain or cord?


Yes.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jul 16, 2013 9:08 am

Where are the lesion located in the brain? Where are they located in the cord?
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Re: CCSVI and CCVBP

Postby THX1138 » Tue Jul 16, 2013 9:50 am

I was diagnosed about 10 years ago.

Below are the most recent MRI's


22-Jan-2013 09:03:00 Exam: MRI THORACIC Sp wo&w
Indications: Multiple Sclerosis NOS
ORIGINAL REPORT - 22-Jan-2013 09:19:00 RMH
EXAM: MRI Thoracic Spine without and with IV contrast:
COMPARISON: None.
CONCLUSION/IMPRESSION:
1. There is at least one and possibly two areas of T2 hyperintensity
in the lower thoracic spinal cord with appearances consistent with
demyelinating disease.
FINDINGS: Small focal area of T2 hyperintensity in the ventral spinal
cord at the L1 level (series 7 image 32) could be seen with
demyelinating disease. There is a possible tiny second area of T2
hyperintensity in the left hemicord just inferior to this, just above
the level of the conus. Otherwise, no additional T2 hyperintense
lesions or abnormal enhancement identified in the thoracic spinal
cord.
There are a few prominent flow voids posterior to the spinal cord on
the sagittal T2 images, but the overall appearance is most consistent
with CSF flow rather than vasculature. No significant spinal canal
narrowing in the thoracic spine.
RT998
Electronically signed by:
V.T. Lehman MD 8-9840 22-Jan-2013 09:19


_________________________________________________
21-Jan-2013 09:54:00 Exam: Interp of OS MR Head
21-Jan-2013 09:54:00 Exam: Interp of OS MR Spine
Indications: innitus subjective r (388.31); multiple sclerosis nos
(340)Indications: innitus subjective r (388.31); multiple sclerosis
nos (340)
ORIGINAL REPORT - 21-Jan-2013 16:50:00 GONDA
EXAM: Outside head and cervical spine MRI without and with IV
gadolinium 11/2/2012 and time of flight intracranial MRV, and neck
MRA/MRV without and with IV gadolinium 11/23/2012.
CONCLUSION/IMPRESSION: Extensive brain and cervical cord demyelinating
lesions, none with abnormal enhancement. Dominant right
transverse/sigmoid system on a developmental basis. No evidence of
dural AV fistula.
FINDINGS: Multiple T2 hyperintense lesions compatible with clinically
reported multiple sclerosis. Specifically, there are multiple lesions
at the brainstem including a prominent lesions at the left and right
ventral medulla, left dorsal medulla, dorsal right and central pons,
and ventral left midbrain.
Supratentorially, there are additional lesions at the right thalamus,
multiple lesions at the corpus callosum, periventricular white matter,
including at left greater than right temporal horns, with additional
subcortical lesions at multiple sites bilaterally. Some lesions
demonstrate T1 hypointensity. No enhancing lesions. Mega cisterna
magna. Retention cyst left maxillary sinus
Multiple T2 hyperintense lesions, characteristic of demyelination also
at the cervical cord, with the dominant lesion at right C6 with
multiple smaller lesions, including at C3 and C4 levels. No clear
abnormal enhancing lesions at the cervical cord. No spinal canal or
neural foraminal stenosis.
Noncontrast intracranial MRA 11/23/2012 demonstrates a relatively
small vertebrobasilar system with large bilateral posterior
communicating arteries. No focal intracranial stenosis or aneurysm.
Time-of-flight intracranial MR venography 11/23/2012 demonstrates a
dominant right transverse/sigmoid sinus system, in keeping with larger
right jugular foramen as demonstrated on 11/1/2012 head CT. Somewhat
hypoplastic left transverse/sigmoid system without evidence of
thrombosis on available images.
Gadolinium bolus neck MRA 11/23/2012 demonstrates both carotid
bifurcations to be widely patent. Both jugular veins patent in the
upper neck and at distal intracranial sinuses. Early origin of left
vertebral artery. No evidence of dural AV fistula from the available
images.
RT999
Electronically signed by:
R. Watson MD. 4-6969 21-Jan-2013 16:50
_______________________________________________________

21-Jan-2013 09:54:00 Exam: Interp of OS MR Head
21-Jan-2013 09:54:00 Exam: Interp of OS MR Spine
Indications: innitus subjective r (388.31); multiple sclerosis nos
(340)Indications: innitus subjective r (388.31); multiple sclerosis
nos (340)
ORIGINAL REPORT - 21-Jan-2013 16:50:00 GONDA
EXAM: Outside head and cervical spine MRI without and with IV
gadolinium 11/2/2012 and time of flight intracranial MRV, and neck
MRA/MRV without and with IV gadolinium 11/23/2012.
CONCLUSION/IMPRESSION: Extensive brain and cervical cord demyelinating
lesions, none with abnormal enhancement. Dominant right
transverse/sigmoid system on a developmental basis. No evidence of
dural AV fistula.
FINDINGS: Multiple T2 hyperintense lesions compatible with clinically
reported multiple sclerosis. Specifically, there are multiple lesions
at the brainstem including a prominent lesions at the left and right
ventral medulla, left dorsal medulla, dorsal right and central pons,
and ventral left midbrain.
Supratentorially, there are additional lesions at the right thalamus,
multiple lesions at the corpus callosum, periventricular white matter,
including at left greater than right temporal horns, with additional
subcortical lesions at multiple sites bilaterally. Some lesions
demonstrate T1 hypointensity. No enhancing lesions. Mega cisterna
magna. Retention cyst left maxillary sinus
Multiple T2 hyperintense lesions, characteristic of demyelination also
at the cervical cord, with the dominant lesion at right C6 with
multiple smaller lesions, including at C3 and C4 levels. No clear
abnormal enhancing lesions at the cervical cord. No spinal canal or
neural foraminal stenosis.
Noncontrast intracranial MRA 11/23/2012 demonstrates a relatively
small vertebrobasilar system with large bilateral posterior
communicating arteries. No focal intracranial stenosis or aneurysm.
Time-of-flight intracranial MR venography 11/23/2012 demonstrates a
dominant right transverse/sigmoid sinus system, in keeping with larger
right jugular foramen as demonstrated on 11/1/2012 head CT. Somewhat
hypoplastic left transverse/sigmoid system without evidence of
thrombosis on available images.
Gadolinium bolus neck MRA 11/23/2012 demonstrates both carotid
bifurcations to be widely patent. Both jugular veins patent in the
upper neck and at distal intracranial sinuses. Early origin of left
vertebral artery. No evidence of dural AV fistula from the available
images.
RT999
Electronically signed by:
R. Watson MD. 4-6969 21-Jan-2013 16:50
THX1138
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