Looking for advice/sugestions on what to do next

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Looking for advice/sugestions on what to do next

Postby Rick1866 » Thu Jun 06, 2013 8:16 pm

Hello all:
My name is Rick Im 47.
Carpul tunnel surgery back in 1996.
Ive had open back surgery 7 months ago (epidural lipomatosis).no help with the issues
A steriod shot in my back 2 weeks ago.no help with my issues
It was sugested by my sweet mother that I should ask my docs about MS.She has a friend whos son was just diagnosed with MS and his symptoms seem to fall in line with the issues Im having
and have been reading up on symptoms of MS which has me thinking that mabye It could be.
I have had these issues about 6 years now and things are only getting worse.
I'll be walking along and my right leg just disapears like its not even there I dont fall but it puts alot of strain on my left leg most times there's something to grab on to.
I had an MRI but that was for the lipo.
My doctors have done about 50 gallons of blood work and do not know whats going on (they make me feel like im making this up)
My pcp says it cant be MS because my issues are not progressive, but has no clue whats going on I have asked.

Neuro doc says no cause my blood work says no but have new questions when i go back next week,and would like some sugestions from folks that have been through this so i can ask better questions when I go.

My 6 year frustrations are what brought me here.
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Re: Looking for advice/sugestions on what to do next

Postby CaliReader » Thu Jun 06, 2013 8:42 pm

Good luck next week.

I don't understand 'bloodwork says no' as a reason for not having MS. An MRI brain scan, MRI spine scan or lumbar puncture spinal tap can show evidence for MS.
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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Thu Jun 06, 2013 11:44 pm

CaliReader wrote:Good luck next week.

I don't understand 'bloodwork says no' as a reason for not having MS. An MRI brain scan, MRI spine scan or lumbar puncture spinal tap can show evidence for MS.


Thanks CaliReader:
Basically when I first went to see the neuro doc it was for weak/achy legs and sore feet and not being able to be on my feet for more than 1-1 1/2hrs.
And in the process she had asked me if my regular doc had done any bloodwork I said yes,but she wanted different types of blood work (I think it was 3 vials). After a few visits and 5-6 more vials she said that my bloodwork looks normal and no signs of any of the major "bad diseases" as she put it.

And decided that because Im only 5'6" and 225lbs that I was overweight and that was causing my symptoms
I have been seeing a nutritionist for over a year lost 15lbs and symptoms seem to be getting much worse.
I have MRI's from the base of my skull to my tail bone to try and find out where the nerve damage was or if there was any nerve damage at all.

So im really trying to get some feedback and educate myself a little so the right questions get asked on my next visit. Reading many many post here im leaning more and more towards yes.

Really sorry for being so long winded,just really frustrated.

Thanks
Rick
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Re: Looking for advice/sugestions on what to do next

Postby Ladymac » Fri Jun 07, 2013 8:16 am

Rick,

Without a question, I went through way too many month's of needless testing and worry until I made an appointment with an MS specialist at a MS Center and had my records sent.

Truly they are the only ones that can cut through everything and determine if you have MS. Everything done outside a MS Center including MRI may have to be repeated because their MRI equipment is specific to be able to see what is going on in the brain and spine.

Please do yourself a favor and locate an MS center and even if it is a distance away, it is worth getting diagnosed properly and then they can refer you from there if you need other care. I ran into far too many Neurologists who see MS patients but that isn't their specialty and ended up finally getting the referral and getting things finally put into proper perspective.

Good luck and blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: Looking for advice/sugestions on what to do next

Postby giddiupgal » Fri Jun 07, 2013 9:52 am

Rick,

I went through the same frustration you are. My blood work, lumbar puncture, and history indicated no MS. Even when a neurologist looked at it, he couldn't find the lesions. When I was referred to an MS center, it took the specialist about 30 seconds to point out the 3 large lesions in my brain that were causing my right side weakness (same leg issues you are having), cognitive dysfunction (I had just finished my Master's degree Summa Cum Laude while working full time at a law firm and raising two kids), and fatigue.

I was diagnosed at the age of 49 and my MS doc thinks I have had it since my 20's. Don't give up. Whether you have MS or not, you should find out definitively so you can get started on medication if you do. I am now on full disability, but thankful that I know what I am dealing with. Going through the diagnosis process is really frustrating. I had one neuro tell me it was all in my head (no kidding, MS is in our head! :smile:

Best of luck to you. Don't give up.

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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Fri Jun 07, 2013 10:42 am

This is a post from a different forum (seems like a ghost town in the MS thread). exact opposite of this forum.

Thank you Ladymac & giddyup.
It seems I need to be even more diligent requesting an MS specialist.

A little more about my condition.

Up until about 5-6 yrs ago I was able to walk/sit without issues. But now I have trouble walking/sitting without discomfort (very sore feet tired legs).
After being on my feet for any lenght of time (45mins-1 hr) my right leg seems to give out(like stepping in a hole) some days more than others. There's no pain but is very frustrating.
And to add after being on my feet after an hr or so (some days better than others) but always end up with my legs kinda feezing up and severe pain in my lower back and have to revert to baby steps.
Neuro doc said it was a weight issue (seeing a nutrionist) and after much arguing was sent to a spine specialist ten minutes into visit Dr says this is not a weight issue (epidural lipomatosis) 1 week later I had sugery to remove what they thought was the issue (no relief from issues).
Fast forward 6 months spine Dr sends me for steroid shot couple days of relief but back to same issues.
Sugurey was 7 months ago.

Now the reason for posting here and now.
My mother has a friend whos son was just diagnosed with MS (roughly my age). So apparently whilst their talking about the issues he has, it was brought to my attention. So researching I went, and after reading many of the symptoms and issues of MS and thinking back I have the following issues....eyepain,floating white spots,double vision,head aches,sore feet,complete left side numbness,legs giving out(still do),pins and needles in my hands and feet (still do),limb weakness,severe fatigue,Gerd,trouble remembering things,slurred speach,joint pain, im sure there's more maybe i should write them all down.

A sense of urgency has appeared as too what is going on with the issues im having (hoping it's not MS) and would like to eliminate as many possibilities I can,and someday soon figure out whats going on and get this figured out it has been 5-6 yrs now with no answers or solutions (other than the surgury)which changed absolutly nothing.
My biggest fear right now is I get the feeling as this continues (not getting better) i'll no longer be able to walk, So if thats my plight so be it. Im in the mind set that I need to know now to eliminate that possibility or exept the fact and prepare myself that my legs will soon be of no use.
So i call my PC Dr his words were you do not have MS because your issues are not progressive (thought to self could walk without issues 5-6 yrs ago but today i cant) but said i should talk to my Neuro doc, so here we are on this fine June day looking for insight,help & advice to get to the bottom of all these issues with myself & Drs.
Any help or advice would be greatly appreciated.

Thank you in advance to all.
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Re: Looking for advice/sugestions on what to do next

Postby lyndacarol » Fri Jun 07, 2013 4:48 pm

Rick1866 wrote:Im only 5'6" and 225lbs that I was overweight

Welcome to the ThisIsMS community, Rick.

Since you stated, "Any help or advice would be greatly appreciated," I make my standard suggestion: Ask your PCP for a "fasting blood insulin test" – this is NOT the same as a glucose test. The optimal result for the insulin test is 3 UU/ML or lower. I suspect that your insulin level is much higher because your doctor says that you are overweight – insulin is necessary to put on weight.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Sat Jun 08, 2013 12:31 pm

lyndacarol wrote:
Rick1866 wrote:Im only 5'6" and 225lbs that I was overweight

Welcome to the ThisIsMS community, Rick.

Since you stated, "Any help or advice would be greatly appreciated," I make my standard suggestion: Ask your PCP for a "fasting blood insulin test" – this is NOT the same as a glucose test. The optimal result for the insulin test is 3 UU/ML or lower. I suspect that your insulin level is much higher because your doctor says that you are overweight – insulin is necessary to put on weight.


I had a fasting blood test a couple weeks ago, something to do with liver function.
Would the insulin levels also be recorded in the same test or is it a different test all together?
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Re: Looking for advice/sugestions on what to do next

Postby lyndacarol » Sat Jun 08, 2013 4:22 pm

Rick1866 wrote:I had a fasting blood test a couple weeks ago, something to do with liver function.
Would the insulin levels also be recorded in the same test or is it a different test all together?


The fasting blood insulin test is a completely different test. It is not routinely done; it must be specifically requested.


http://www.mercola.com/nutritionplan/index2.html

Factor #1: Your Insulin Level

Insulin and leptin are absolutely essential to staying alive, but the sad fact is that most of you reading this have too much, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.

Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.

Your body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.

However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin and leptin resistant, and then diabetic.

If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.

Compounding the problem, when your insulin and leptin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.

Your Fasting Blood Insulin Test

To find out your insulin and leptin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin and leptin test, The tests are done by just about every commercial laboratory and the insulin test is relatively inexpensive.

Facts about Your Fasting Insulin Test:
o This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful. A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.

o You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.

o This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.

o If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level.
Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.

o Exercise is of enormous benefit in improving the sensitivity of your insulin and leptin receptors, and to help normalize your insulin level far more quickly.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Sat Jun 08, 2013 5:21 pm

Thank you.
My doctor is supposed to call me monday so i will ask him for the test.
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Re: Looking for advice/sugestions on what to do next

Postby vesta » Sun Jun 09, 2013 8:47 am

Delay Drugs One Year OR reinforce your healing WITH the drugs by optimizing your nutrition and treating the BLOOD REFLUX

On the site ThisisMs.com Alicia asked the following question:

Tues June 4 2013 General Discussion

"I have a question for you. How can anyone possibly tell if a disease modifying
drug is preventing relapses if no one really knows how MS works, everyone's MS
is different and it is impossible to predict when and how often you will have a
relapse? How can studies possibly test this? Even if you are testing a group of
people with MS and averaging everyone's response to a medication, how is that
really saying anything definitive? Why are the disease modifying drugs only
approved for RRMS? Correct me if I'm wrong, are there any approved for other
types of MS like PPMS? How does someone with RRMS know if they are doing well
because of a medication or if it is the natural course of their disease going
into remission? How does anyone know that?

The truth is, there is no good answer. That being the case, I believe one would be well advised to tell one's Neurologist one wants to delay a drug protocol for at least a year from the time one is diagnosed. Why? In order to avoid being pressured into treatment before one can research and try alternatives.

Keep in mind that it is possible to have one big MS attack never to be repeated. This implies for me that a hugely stressful event may cause a major blood reflux into the brain. No further major stresses, no further MS attacks. Let's say one begins taking a drug after this attack which appears to put an end to the MS. Was it really the drug, or would that have happened anyway? And in the meantime one's immune system is being unnecessarily damaged. Perhaps the Placebo effect is at work. "I'm being treated so now I can relax." Well, even if it's the drug which brings relief for primarily psychological reasons, perhaps another less toxic solution would be preferable.

Why a year? That is considered a grief milestone. After passing through each season one can begin to move beyond the loss of a previously carefree life.

Now for a few the only thing they may need to give up is excess Aspartame consumption. (See blog aspartame ms).
Most should drastically alter their diet, and in particular stop eating glutens (ie wheat). Grieve for Junk food as you throw it away. Detoxification is no doubt in order, and optimum nutrition as well as Supplements. My suggestions can be found under Paleo-Macro diet.

Vitamins? Extract raw vegetable juice twice a week. Carrots as a base will provide adequate Vitamin A. Take a good B complex , making certain vitamin B12 is included. Vitamin C. Vitamine D3 in an important dose. Vitamin E. Calcium/Magnesium 2/1 ratio. Evening Primrose Oil pearls, Omega 3 pearls. These are minimums.
A Kinesiologist used muscle testing to determine my ideal diet and supplements found under Diet section.. Seek advice from a Naturopath/Nutritionist. Check out You Tube Dr.Terry Wahls "Minding Your Mitochondria" for a good visual presentation of dietary transformation as well as where you might end up by taking MS drugs for 7 years as she did. In that sense her video is a cautionary tale.

I realize now that a Shiatsu massage stopped my first known MS attack. (See blog post Pallis/Shiatsu Massage.) I'm convinced MS attacks are caused by a blood reflux into the central nervous system - brain and spinal cord. So if you are having attacks, take measures to stop them. A Massage may do it, Acupuncture treatment, Ayurvedic massage, Osteopathic treatment. Even a well prescribed Homeopathic remedy. I now give myself daily Acupressure treatments with a TENS apparatus to keep the blood flowing and stop attacks. (See Acupuncture blog post).

I've come to the conclusion there are 3 major causes of the blood reflux 1) toxicity (e.g. dietary -see above)
2) skeletal and 3) vein stenosis (Dr. Zamboni's CCSVI).

Toxicity you can deal with yourself, though good guidance will help.

If the problem is skeletal body manipulators such as chiropractors and osteopaths may be needed. Dentists treat jaw misalignments which may interact with upper cervical misalignements. (Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood
circulation leading to a blood reflux implies that attention should be paid to
all aspects of brain physiology. In fact, before considering angioplasty, I
believe one should consult specialists in skeletal adjustment - chiropractors,
osteopaths, dentists - whose manipulations might release blocked blood/fluid
circulation from the head and spinal cord. This is especially important if the
MS develops after an accident. In such cases the problem does not reside IN the vein but
pressure ON the vein.)

Vein stenosis will require venoplasty, the use of a catheter to open and "balloon" a "stenosed" vein. This requires a competent, experienced interventional radiologist. I would eliminate the other possibilities before trying this, and it could well take a year to come to this decision.

For further information check out the site ThisIsMs.com. Under the
CCSVI thread 1) for Angioplasty see "Dr. Sclafani answers some questions"
which is particularly informative since Dr. Sclafani presents reports of
angioplasties he has performed complete with photos. An excellent example
revealing how CCSVI treatment has evolved can be found on page 519 May 21,
2013. Dr. Sclafani performed venography of "both dural sinuses, jugular
veins, brachioicephalic veins, azygos vein, left rebal vein, and ascending
lumbar vein and the inferior vena cava".
2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl. (I am suggesting these sites for information only - a starting point in your own research.)

Another thing to consider is a latent infection - viral or bacterial. I myself use nutritional therapy to strengthen my immune system to keep these infections "latent". I also use Homeopathy to protect myself. The remedy Oscillococcinum by Boiron works marvellously well to prevent colds and flus - all viruses in fact. The care of a good classical Homeopath (single remedy) can work wonders in the Healing process. However, they are often difficult to find. Antibiotics and chemicals will antidote Homeopathic remedies (even coffee for some) so they won't work once on a heavy drug protocol.

I believe MS patients exhibit these 2 basic factors to varying degrees - the
blood reflux and the viral immune system assault. (Perhaps bacterial as
well e.g. Chlamydia Pneumoniae) And to complicate things further,
the origins of the blood reflux vary - body tension, skeletal, or vein stenosis.
A complicated picture with no one-size-fits-all solution. While scientists
thrash this out, I believe it is up to me to find practical solutions to
take care of myself.

Let's say one is having symptoms of paralysis, one is very ill, naturally one panics. Lab tests follow, spinal tap, MRI, CAT scan, eye exam, other? and the Doctor concludes with a MS diagnosis. I believe now is the time to say STOP before falling into the MS trap. This may displease the Neurologist. By saying you want to put off drugs for the present, you are not saying "no", you are saying "let's wait".. This is a more diplomatic way of escaping the MS trap. Because it is a TRAP.

Wheelchair Kamikaze recently (April 17, 2013) posted a blog entry "Anger Mismanagement".
He doesn't say so, but one good reason for this anger could well be that one has the impression of being taken for a dupe. One undergoes all the diagnostic exams - some painful - one submits to drug treatment - some painful, and one falls apart anyway. Doesn't it occur to the victim that obedience wasn't the best idea? Marc admitted that none of the drugs have helped him. Annette Funicello, who died recently, felt that the only treatment which helped her was CCSVI angioplasty. Even though the treament came too late for her, she wanted her Foundation to promote it, even though the big Pharma and Neurology lobby fiercely oppose it.

My approach is more practical than theoretical. What has helped me, what does it feel like to live in an MS body, what do I need to do and to avoid. Dr. Zamboni's blood reflux theory liberated me. Why not others?

AND I BELIEVE IT IRRESPONSIBLE FOR NEUROLOGISTS TO IGNORE THE BLOOD REFLUX FACTOR IN MULTIPLE SCLEROSIS.

Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new
lease on life. I used to live in constant fear of a debilitating relapse. Now I
know what to do to head off a breakdown. Having embarked once again on my diet I
feel better and hopeful of improvement in the future. I know that anything which
improves blood/brain fluid circulation (swimming, acupuncture, acupressure,
massage, kinesiology, osteopathic, chiropractic, any energy therapy) will make
me feel better and prevent a relapse. Having resumed summer swimming, I feel so
energized, my brain is "breathing" oxygen again. (see post Oxygen and MS fatigue). And I need to
be ever vigilant in avoiding illnesses which might trigger off a latent
virus.

I hope other Multiple Sclerosis patients will consider these ideas in managing their own treatment.

MS Cure Enigmas.net
Last edited by vesta on Wed Jun 12, 2013 10:01 am, edited 1 time in total.
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Re: Looking for advice/sugestions on what to do next

Postby Ladymac » Sun Jun 09, 2013 5:45 pm

FDA NEWS RELEASE

For Immediate Release: May 10, 2012
Media Inquiries: Michelle Bolek, 301-796-2973, Michelle.Bolek@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

FDA issues alert on potential dangers of unproven treatment for multiple sclerosis

The U.S. Food and Drug Administration is alerting health care professionals and patients1 about injuries and death associated with the use of an experimental procedure sometimes called “liberation therapy” or the “liberation procedure” to treat chronic cerebrospinal venous insufficiency (CCSVI).

Some researchers believe that CCSVI, which is characterized by a narrowing (stenosis) of veins in the neck and chest, may cause multiple sclerosis (MS) or may contribute to the progression of the disease by impairing blood drainage from the brain and upper spinal cord. However, studies exploring a link between MS and CCSVI are inconclusive, and the criteria used to diagnose CCSVI have not been adequately established.

“Because there is no reliable evidence from controlled clinical trials that this procedure is effective in treating MS, FDA encourages rigorously-conducted, properly-targeted research to evaluate the relationship between CCSVI and MS,” said William Maisel, M.D., M.P.H., chief scientist and deputy director for science in the FDA’s Center for Devices and Radiological Health. “Patients are encouraged to discuss the potential risks and benefits of this procedure with a neurologist or other physician who is familiar with MS and CCSVI, including the CCSVI procedures and their outcomes.”

The experimental procedure uses balloon angioplasty devices or stents to widen narrowed veins in the chest and neck. However, the FDA has learned of death, stroke, detachment and migration of the stents, damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the experimental procedure. Balloon angioplasty devices and stents have not been approved by the FDA for use in treating CCSVI.

MS is a progressive, immune-mediated disorder of the brain and spinal cord. In MS, the lining around nerve fibers, and often the nerve fibers themselves, in the brain and spinal cord are injured, resulting in significant and disabling neurological symptoms. The underlying cause of MS is not known.

Complications following CCSVI treatment can be reported through MedWatch2, the FDA Safety Information and Adverse Event Reporting program.

The FDA also is notifying physicians and clinical investigators who are planning or conducting clinical trials using medical devices to treat CCSVI that they must comply with FDA regulations for investigational devices3. Any procedures conducted are considered significant risk clinical studies and require FDA approval, called an investigational device exemption.

In February 2012, the FDA sent a warning letter4 to a sponsor/investigator who was conducting a clinical study of CCSVI treatment without the necessary approval. The sponsor/investigator voluntarily closed the study.

The FDA will continue to monitor reports of adverse events associated with “liberation therapy” or the “liberation procedure” and keep the public informed as new safety information becomes available.

For more information:
Medical Device Safety5

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: Looking for advice/sugestions on what to do next

Postby DougL » Mon Jun 10, 2013 7:48 am

Ladymac wrote:FDA NEWS RELEASE

For Immediate Release: May 10, 2012
Media Inquiries: Michelle Bolek, 301-796-2973, Michelle.Bolek@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

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Re: Looking for advice/sugestions on what to do next

Postby vesta » Mon Jun 10, 2013 9:41 am

The FDA is subject to political pressure by vested interests (like drug companies for instance). Let's look at the Aspartame approval. FDA scientists determined that Aspartame caused cancer in rats and refused to approve it for human consumption. Donald Rumsfeld was CEO of Searle the manufacturer at the time. Days after President Reagan took office, Rumsfeld appointed a lackey to head the FDA and Aspartame was subsequently approved against the recommendations of their own scientists. Its toxicity has since been well documented, but it remains on the market.
Now, it would be nice if the FDA were not subject to political pressure by commercial interests. Liberation Therapy is still being performed, what the FDA ban has done is force people to pay out of Pocket since insurance companies refuse to pay for it as "experimental". Yes, there have been problems, but responsible interventional radiologists are working on these. (And most problems arose because people were forced to go overseas for treatment and refused follow-up care at home.) One has reason to suspect that the drug companies put pressuree on the FDA for their own selfish purposes to block development of a promising procedure. If you take the trouble to read what I wrote, I would consider other options - toxicity or skeletal - before looking into angioplasty. But many have been helped enormously. Why force development underground? Let's be civil in our discussion.

MS Cure enigmas.net
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Re: Looking for advice/sugestions on what to do next

Postby Ladymac » Tue Jun 11, 2013 12:00 pm

The National MS Society
Over $2.4 million has been committed by the National MS Society (USA) and the MS Society of Canada to support 7 new research projects focusing on the role of CCSVI (chronic cerebrospinal venous insufficiency) in MS.

Initial seven funded studies
The work of the researchers in these initial studies will not involve the actual treatment of CCSVI, but rather the investigation and determination of its prevalence in different circumstances


http://www.nationalmssociety.org/resear ... index.aspx

The above link you can read about the results and the research. This is not the FDA, and it is not just the USA, this is a Global Research Project, still on-going, hardly "underground."

http://www.nationalmssociety.org/resear ... index.aspx

There is a lot of great reading on this website including some of the preliminary findings and continued research.

Besides DMD (Disease Modifying Drugs), proper diet, exercise, etc., agreed is also important. However, there is safety concern as well as research providing information as stated from the National MS Society below:

CCSVI Treatment):First results from a controlled endovascular treatment trial (percutaneous transluminal venous angioplasty) were presented by Drs. Robert Zivadinov, Adnan Siddiqui and the team from State University of New York at Buffalo. In this blinded study, 9 people had the angioplasty and 10 had a sham treatment. At six months, the team did not detect adverse events from the treatment, but also found that it failed to provide sustained improvement in venous outflow. They also found that those whose veins increased in outflow tended to have increased MS disease activity seen on MRI. (Emerging Science Poster P04.273)

Prevalence of CCSVI in MS: Dr. Robert Fox, Claude Diaconu and a team at Cleveland Clinic and Case Western Reserve reported preliminary results from a National MS Society-supported study of CCSVI in 61 people with different types of MS and 20 people without MS. They used ultrasound techniques that included technicians trained in CCSVI assessment who were unaware of the participants’ disease status. Although changing the interpretation of CCSVI criteria produced substantial differences in the proportion of participants meeting those criteria (20% to 40% of non-MS met criteria versus 21.3% to 36.1% of MS participants), there was no significant difference between the non-MS and MS groups. (Abstract P05.177)

We all wait for a cure, and can read the research data in hope that something comes along. Right now the DMD are working.
Blessings,

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