CCSVI and CCVBP

[NZer1]

Thank you for the feed back Dr F and Vesta and Dr F who is the person I need to see for a "head to foot basic orthopedic and neurological exam of the spine and extremities including observation of posture and balance, palpation, ranges of motion, muscle tests etc" is it John or a GP or a Specialist of some type?

I need to be this 'right' and to stop going here, there and everywhere and getting nowhere in the process but becoming broke!

I want most of all a document with the outcome of any form of assessment.

My current problem is that now a Psychologist has been involved he has written a document saying I am psychosomatic and that GP's etc should stop assisting me to find what is happening, that I am Dr shopping, that I should stop going on the net, that I should stop talking on chat rooms and that I should get some real live friends, get out and rejoin the community.

So the appointment has been so negative because a series of Professional fails eg the Psychologist did not read my medical history he only went by a referral letter from a GP who was asked to give a second opinion on my overall health because she had Neurological experience in her home country Argentina. She spent 20-30 minutes with me and I was stressed from fatigue and lack of sleep for the last 8 months and just had an experience that I should have gone to Hospital for, by Ambulance, due to the acute panic of the effects of this problem, a hypoaxia type of reaction over nite. More to this story but the point is that the GP and Psychologist have made some serious Professional mistakes by not reading the data on my file that proves there is Neurological conduction and Vascular aka CCSVI findings of concern and that they have made assumptions.

So Dr F who am I to see? Who will have a respected opinion?

Regards all,
Nigel

[uprightdoc]

... Want I wanted to ask; legs are very weak, little movement....but if a fly walks over legs or toe I can feel it. How about damaged nerves?

You have significant atrophy of the cord. There is a good chance you have nerve damage. Atrophy of the cord can occur due to a die forward or die back process. Two major causes of nerve damage, die forward and die back processes are ischemia and compression. You showed no signs of compression of the cord or arteries on your upright MRI that could potentially cause atrophy. You do have hyperintensity signals in the brain that can be signs of chronic inflammation, ischemia, edema and nerve damage. Nerve damage in the motor cortex of the brain can initiate die forward processes in nerves. More importantly, you have stenosis of the lower spinal canal that is compressing the epidural space and veins, as well as the cord. Stenosis of the canal can cause chronic inflammation, ischemia and edema in the canal and cord that can initiate neurodegenerative processes that could result in die forward and die back processes. Surgeons have had some good results revascularizing the cord in cases of ischemia. They have also has good results in surgical decompression of the cord due to stenosis. The problem is trying to determine which patients will benefit and which one have permanent deficits. It is the same problem in patients with normal pressure hydrocephalus. The challenge is determining which patients will benefit.

[NZer1]

I think there is one major point you miss Dr F "The challenge is determining which patients will benefit.", in REALITY the challenge is finding a Specialist with experience and knowledge PLUS TIME to dx!

;)

[vesta]

.

My current problem is that now a Psychologist has been involved he has written a document saying I am psychosomatic and that GP's etc should stop assisting me to find what is happening, that I am Dr shopping, that I should stop going on the net, that I should stop talking on chat rooms and that I should get some real live friends, get out and rejoin the community.

Hello Nigel:

What an outrageous document. It amazes me that MDs can be so arrogant in their ignorance, (they don’t know that they don’t know) that their attitude towards MSers borders on sadism. Maybe we should be relieved they no longer practice lobotomies.
These people are suffering from the Semmelweis Reflex – Wikipedia definition-
“The Semmelweis Reflex is now used as "a metaphor for the reflex like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms."
Dr. Timothy Leary in The Game of Life more pithily defined this reflex as "Mob behavior found among primates and larval hominids on undeveloped planets, in which a discovery of important scientific fact is punished"
(Punished is a good word for it.)

Allow me to tell you a story about my first attack which only now I’ve come to understand over 30 years later. Obviously you need to find a competent healer who can understand and deal with the structural problems, but in the meantime this might be an idea to help you feel better with unexpected benefits.

Dr. Christopher Pallis and Shiatsu Massage
My first known MS attack paralysed my right arm. My HMO Neurologist said that mine was
an unusual case and asked if I would come to be examined by a renowned British
Neurologist who would be giving a Master Class at the Hospital.
Dr. Christopher Pallis struck me as gruff and arrogant. He stood at the
head of a classroom of white coated Doctors before a chalk board and asked
me to sit on a small grey folding chair. He asked me to perform certain
manipulations with my arms and hands after which he asked me to remove my boots
to continue the examination of my legs and feet. He then drew on the board a
tube like structure, making a partial “bite” in it, explaining that this
was an unusual case since the lesions didn’t go all the way through as
evidenced by the fact that the right leg was not affected like the right
arm/hand. (I reflected that If they had, I would have been unable to walk. I
can’t recall his exact words.) He then turned towards me and very assertively
said that I would entirely recover save for some residual clumsiness in my
right hand…
I left somewhat offended and discouraged. On
arriving at the hospital I must have been feeling reasonably well since I had
taken the bus to get there. On leaving I felt much worse and as I walked home from the bus
stop my legs were heavy as though I was pushing through 3 feet of water.
Translation, the encounter with Dr Pallis must have stressed me and the blood
must have been backing up into my Central Nervous System. I felt I had done
my Neurologist a favour with no real benefit to myself.

Today, 33 years later, I can see the benefit. I am proud to have been examined by a world
famous Neurologist… And I’m convinced his analysis was
the right one. My Neurologist wrote that Dr. Pallis thought I had a spinal
cord lesion (which is what he must have drawn on the board.)…

How is it that the “attack”didn’t “eat through”the entire spinal cord
which would have left me unable to walk? My answer. The Shiatsu massage of 38
days earlier.

My notes show that when I went to the Emergency
room on May 2 my upper spine burned fiercely. After the massage on May 9 I felt
a total relief, even though the steam bath/sauna heat aggravated symptoms for a
few days. The massage must have stopped the blood reflux onto the spinal cord. By May 14, even though I had undergone a CAT scan and EEG (which normally would have worsened my condition) I was feeling much better.

The lesson of Chapter 3 is that I inadvertently saved my legs by
getting a Shiatsu massage. I believe any deep tissue massage would have done. If I had
avoided the heat of the steam bath and sauna, I could have avoided the temporary
nervous system aggravation. (All massages release toxins from the muscles so one generally is tired the following day.) My Neurologist was puzzled, he was getting ready to launch me into steroid treatment, but then the whole process stopped. No one asked if I had done
anything to arrive at this. Too bad Dr. Pallis didn’t think to ask.

I now believe at the first onset of MS symptoms one should get a massage. Why not? I
can’t see any possible harm, and the benefits may be beyond anyone’s expectations.

(Previously published on my site mscureenigmas.net)

Best regards, Vesta

[uprightdoc]

You're right Nigel. I can't think of any professionals who would do an appropriate exam on you. When a patients complains of balance issues you need to examine balance. When a patient complains of weakness and spasms you need to manually examine muscles.

[uprightdoc]

Hello Vesta,

Shiatsu is a terrific form of massage. It's even better when applied specifically. I did Shiatsu and deep tissue massage myself on patients who needed it. I found it to be very helpful. I also used a heavy duty G5 massage unit with six speeds and multiple interchangeable heads. It was great for low or high speed very deep tissue massage. In addition to massage, it was also used for effleurage to expel mucous from the lungs in cases with cystic fibrosis. I based my method of treatment on specific clinical physical findings from standard orthopedic, neurological and kinesiological examination along with understanding the specific pathologies involved. Massage is a good tool.

[NZer1]

"You're right Nigel. I can't think of any professionals who would do an appropriate exam on you."

So I wonder how many patients hit the wall, a wall called Reality!

;)

[uprightdoc]

Forget the case worker. Just go to a chiropractor, osteopath, physical therapist or masseuse that knows how to treat a cervical strain and get a few treatments. Patients with conditons such as yours need regular periodic care.

[vesta]

Hello Vesta,

Shiatsu is a terrific form of massage. It's even better when applied specifically. I did Shiatsu and deep tissue massage myself on patients who needed it. I found it to be very helpful. I also used a heavy duty G5 massage unit with six speeds and multiple interchangeable heads. It was great for low or high speed very deep tissue massage. In addition to massage, it was also used for effleurage to expel mucous from the lungs in cases with cystic fibrosis. I based my method of treatment on specific clinical physical findings from standard orthopedic, neurological and kinesiological examination along with understanding the specific pathologies involved. Massage is a good tool.

Thanks upright doc for the input, which for some weird reason I didn't notice until now. Sorry for my delay.
I didn't realize until after I had read about the "blood reflux" CCSVI theory, read my medical file I had obtained from the HMO and compared it to my journals written at the time of my first "attack" that I realized the Shiatsu had stopped the attack. It is APPALLING to me to realize that a little piece of knowledge - Shiatsu massage can stop a serious attack - could have prevented all the handicaps I now have.

In my opinion when someone arrives with symptoms like mine, first thing a Shiatsu massage as well as a cine upright MRI to see if there are physical obstructions. Patients should insist on those basic initial measures.

Anyway, thanks for your ongoing very informative comments.

Best regards, Vesta

[Robnl]

Hi doc,

Next week george wil be in the US for Blair course. George plans to organize a symposium about the cervical issues. He will try to invite the Blair instructor to come to Europe. No more info yet...

And you are right (again) ...Myvision is doubtful...

[uprightdoc]

Hello Robert,

I prefer standard orthopedic, neurological and manual muscle testing. Manual muscle tests are one of the best ways to check the musculoskeletal and nervous systems. Standard tests are also good for monitoring patients pre and post treatment.

[uprightdoc]

... I was just wondering if you'd received the CD's ok? ... Mark.

Hello Mark,

I have reviewed your Upight and Cine MRI scans, as well as Dr. Smith's report. There is a great deal of difference in the Upright MRI and Dr. Smith's report compared to your upper cervical x-rays. The upright MRI is fairly unremarkable. On the other hand, the upper cervical x-rays show significant misalignment and possible scoliosis. It would be helpful if you had basic x-rays of your lower spine to check for abnormal curvatures.

[Robnl]

Hi doc,

Maybe mark has twisted c0,c1...... Like me?

[Robnl]

..

[Robnl]

Double