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trisca wrote:I went to the gp this morning. I specifically mentioned wnting to know what my magnesium levels are. He, as expected, just fobbed me off to a neuro. I tol him I wasn't interested in seeing a neuro that was only concerned with beta interferons and to find me one that would look at things like magnesium. He's promised to look into it and find me a 'sensible' one. We'll see.

now i see your problem. its your GP. you do not need to go to a neurologist to get blood tests. your GP should order those. your neuro should order things like an MRI, suggest treatment (drugs?) and point out how little you know compared to them.

talk to jimmylegs again and get a list of the things to test. write them all down on a piece of paper and take that to your GP. tell him "this is the list of things i want tested. please fill out the form so I can go to a qualified lab and get the tests done". if he asks why you want to know such foolish things as your zinc level, tell him that you are getting old and want to take better care of yourself thru diet and exercise. politely thank him very much and when you get the results back from the lab, come here again and show jimmylegs. you will likely get a very detailed response on what you can do to address any issues you may have such as magnesium. if the lab sends the results to your GP and he says "everything is normal" ask to get a copy of the actual numbers because there is some suggestion that normal is not good enough for pwMS.

of course this is all just my opinion and not meant to be medical advice cause i am not a doctor nor do i play one on TV or the internet

He didn't want to do anything, he's a gp. GPs just refer you (at least on the NHS.) They only do tests if they're trying to figure out who to refer you to, but in my case he already knew. You now see the point of my op.

trisca wrote:He didn't want to do anything, he's a gp. GPs just refer you (at least on the NHS.) They only do tests if they're trying to figure out who to refer you to, but in my case he already knew. You now see the point of my op.

wow, I don't know what to say to that except that doesn't even sound like a doctor.

here is a quote from NHS online:

A blood test is when a sample of blood is taken for testing in a laboratory. Blood tests have a wide range of uses and are one of the most common types of medical test.

For example, a blood test can be used to:

•assess your general state of health
•confirm the presence of a bacterial or viral infection
•see how well certain organs, such as the liver and kidneys, are functioning
•screen for certain genetic conditions such as cystic fibrosis.

The first one looks like it would apply to you. you don't need a referral to anyone. you need to know your general state of health so you can make informed decisions on dietary choices

trisca wrote:He didn't want to do anything, he's a gp. GPs just refer you (at least on the NHS.) They only do tests if they're trying to figure out who to refer you to, but in my case he already knew. You now see the point of my op.

When I want something from my GP, I bring supporting stuff. Like for starting a 6 month blood test routine, I brought this:
http://www.ncbi.nlm.nih.gov/pubmed/22783368 She couldn't really argue and I had to pay $85 for two of the tests. Same with LDN, I printed off some stuff. She couldn't really argue and gave me a script.

A while ago I found this: http://www.overcomingmultiplesclerosis. ... ntId=20084 and
ddropped it off to my eye doc and he got me a referral to somebody who can do the test.

And of course, one is always polite when dealing with these sorts of things.

Barry, did you see my op on uv b therapy? That study on vitamin d is interesting. There are some studies linked to on that thread that points to the sun giving more than just vitamin d.

and point out how little you know compared to them.

LIKE!!!! hahaha my neuro is exactly like that LOL

i used to bring the science to my doc in the early days, now she writes whatever i ask for no question. barry's suggestion is good.

a good doctor story from two yrs ago:

http://www.thisisms.com/forum/general-d ... ml#p130826

Hi everyone

Well, went for the first part of the nerve and muscle testing in my arms and hands. OMG is all I have to say. That was wierd to say the least. It hurt like hell in some places.... next week is my legs and feet, oh boy I cannot wait.

I had with me my latest blood work and all the info that I had received from you all. He was surprised how much info and research material I had and was surprised. He was also surprised I had arrange to have any bloods taken at all. Apparently, his clients do not usually arm themselves with information and bring it to him or take matters into their own hands. He was very impressed and I had to tell him, all kudos goes to everyone here, without you, I would be none the wiser on what or which way to go.

He is going to arrange for me to have a range of blood tests done that will cover everything and he also said my levels were not 'normal' as my Dr had advised me, so thanks everyone for taking time to look at them and give me your feedback. I would of just blindly gone along believing what my Dr had told me if it had not been for you guys.

He also mentioned that he believes there is definitely a link between lack of certain vitamins/minerals etc that play a factor in MS patients and he has wanted to start his own study/correlation of results for his own MS patients and look at what he finds. He is determined now to start this after seeing how interested and thorough everyone has been on here and what information I took him yesterday. He tasked his nurse whilst I was there with getting this ball rolling and I am guinea pig number one.

Once again thanks everyone. We might not make a difference on our own, but together we do.

Mirry

http://www.thisisms.com/forum/general-d ... ml#p130908

how exciting that your specialist is going to start tracking levels in other patients!! that is such a great idea.

mirry i have to say that you deserve some serious kudos too. there are a lot of people who know about the nutrition info out there but not everyone 'takes it to the bank' as it were. good for you for following through.

also you're so lucky to have a specialist to back you up on nutritional work - so important, and not everyone has that advantage, unfortunately.

it remains to be seen what turns up from your investigations but the early stages are very promising. it already looks like you have some action items with ferritin and d3. i look forward to hearing the rest of your results.

good luck with all the rest of the testing. ugh i remember, i had arms hands feet and legs all in one go. fun times. NOT!!

your attitude is great keep your chin up

jimmylegs

http://www.thisisms.com/forum/general-d ... ml#p131683

Hi everyone

This morning I had the nerve and muscle testing done on my legs. I can say without any shadow of a doubt that was by far the worst thing that has ever happened to me. I thought the pain I felt with my back surgery was bad enough, but this was torture. I will never go back for that test again.... ever, ever, ever.

Anyway, on the brighter side. My specialist talked to me this morning about his progress with starting all his patients with MS on vitamins. If you recall, I talked at length with him last week on the information I had obtained from talking on this site and he said he was going to get the ball rolling after being very impressed with the knowledge and information I was presenting him (based on what you had all contributed). Well, he has already contacted the drug companies and the insurance companies and they have agreed to pay for all vitamins/minerals that his MS patients will be prescribed. I couldn't believe it, I knew he was serious when we were talking last week about further studies etc, but I didn't think he would move so quickly. I am so impressed with him and he has gone above and beyond my expectations. I am going back in a couple of weeks (had neck and thoracic MRI's done tonight) to discuss the latest MRI's so will take back to him further information on the vitamins etc and see what information I can gather from him on this visit.

Hope everyone is well

Mirry

http://www.thisisms.com/forum/general-d ... ml#p131725

mirry, sorry to hear about the sucky testing. i remember that one - nasty.

very pleased to hear about the vitamins and minerals your doc is implementing! keep us in the loop as this one rolls out!!

I agree with want2bike. The diet you have resumed is good. (Low fat plus no glutens, no lactose etc plus Primrose oil supplements etc I do think most people should eliminate glutens which probably limited the outcomes of the Swank diet). Doctors can't treat MS and their negativity is really bad for the morale. Being classified as an MS patient is actually a misfortune, everything gets dumped into that basket and communication shuts down. However, you have every right to request specific blood tests if you want to check out vitamin mineral deficiencies. MRI results can't reflect degree of handicap and I don't see the point of them. As soon as I read about the CCSVI theory I began to ask for a neck massage forcing the blood down towards the heart which is enough to stop an "attack" when I'm upset. Every morning I do self acupressure with an electrical stimulus TENS (see Acupuncture entry on my blog MS Cure Enigmas.net for details). I need to do a Youtube demo because people imagine it is complicated which it isn't. And after 19 years I resumed the diet last Jan and really feel much better. I wish I hadn't been so dumb as to stop.
I am not going to take the risk of angioplasty, even though the use of the Intravenous Ultrasound has improved outcomes. For some the problem is not IN the vein, but outside the vein, cerebrospinal pressure closing off the blood circulation which means it should be treated by a chiropractor, osteopath or dentist even. Since diet worked for you in the past, I think you yourself can manage things as long as you consider the blood circulation issue as well. MS Cure Enigmas.net

>MRI results can't reflect degree of handicap and I don't see the point of them.

No kidding, I was much happier before the MRI for the dormant diagnosis, I really wish I hadn't had it done. Who needs a label anyway?

trisca wrote:Barry, did you see my op on uv b therapy? That study on vitamin d is interesting. There are some studies linked to on that thread that points to the sun giving more than just vitamin d.

Yes, I did give it a look. There's so much to read and so much that just isn't known. But, I'm sure that diet, exercise and nutrition help
me manage things to a reasonable level. I'm feeling pretty good all things considered and that's what matters.

We all know there's no cure for us yet, but whatever helps a person improve their quality of life is good. Doesn't matter what. Doctors
need to learn their place too. They don't know either. If simple things like blood tests or eye tests or colour doppler or whatever help,
they help. If a doc doesn't like it - suck it up.

jimmylegs is right about going to the doctor. Mine pretty much lets me get what I want at this point. Maybe I wore her out.

He essentially said he doesn't know how to deal with someone with ms. Which is fair enough, he's a gp. I hope he does do some research and find me a decent neurologist. I mostly just want the diet stuff, like if I'm deficient in something.

early days with my doc it got to a point where i asked her a question and she said to me "i can't answer your questions, at this point you're far more the ms specialist than i am" but she knows i know what i'm doing so it all works out.

healthy diet has to be the foundation, and for me bloodwork is the test of the dietary and supplemental regimen. without the test it's just flying blind.

i have had to get pretty firm with docs that say no to test requests. i sat in a family member's appointment and insisted on the testing and finally the doc said 'who ARE you?' and i said something like 'i am an international patient health advocate' hahaha it was silly but it worked and we got the tests WHICH showed that the problem areas were exactly what i expected. so easy now that we made it past the first hurdle.

if you put the science in front of the doc perhaps he will give you the requisition. i will track down the resources i put together for mirry in 2010 it will be a start.

for now, read this
http://www.thisisms.com/forum/regimens- ... c2489.html

oops i forgot to follow up. here's the link you need
http://www.thisisms.com/forum/general-d ... ml#p128490

Hi. Just started a new topic 'shocking news .... there is a cure'. My sister was diagnosed with MS for 10 years - she is now only 28 years old. We found a cure, her jaw line was not alligned with her skull therefore her nerves were trapped not sending messages to the brain. As time went on, her health got worse and soon she was wheelchair bound. We found an amazing dentistry doctor - DR. Amir in Putney London and a simple brace with bring back her mobility. We have not started the 'brace' treatment but he did some tests which has given us HOPE and we meet some other patients who were also diagnosed with MS, wheelchair users and are now walking !!!! SHOCKING BUT TRUE. PLEASE PLEASE DON'T LISTEN TO THE DOCTORS. THE ONLY ANSWER THEY HAVE IS DRUGS DRUGS WHICH THEY MAKE SO MUCH MONEY FROM. THIS PROCEDURE REQUIRES NO DRUGS JUST A SIMPLE BRACE SO DO EXPLORE - IT MAY WORK FOR YOU.

Vesta
Again, to make a long story short, Dr. Zamboni has discovered the problem – venous blood reflux or CCSVI – but not the sole solution. Detoxification and nutritional therapy coupled with circulation therapies and/or skeletal adjustments may suffice without taking the risk of angioplasty.
[/quote]
Dr Amir
I think your final paragraph is apt.
I just want to add that Atlas asymmetry is very dependent on dental symmetry. The later cannot be resolved with a quick adjustment. It needs prolonged treatment.
The former (Atlas) soon goes out of balance if the later is not corrected.
Correcting the later (dental asymmetry) often obviates the correction of the Atlas as demonstrated in a number of our patients.
Thank you for making an excellent contribution.[/quote]



I believe Dr. Zamboni has discovered the problem – venous blood reflux or CCSVI – but not the sole solution. Detoxification and nutritional therapy coupled with circulation therapies and/or skeletal adjustments may suffice to cure or control MS without taking the risk of angioplasty.
I've concluded there are 5 basic MS types, all of which leading to a reflux of venous blood into the Central Nervous System.
1) CONGENITAL vein malformations. 2) DEVELOPMENTAL vein malformations. 3) AGING vein malformations 4) SKELETAL – Cerebrospinal fluid pressure. 5) TOXIC MS.

As for the current categories of Relapse/Remit and the various Progressive MS's, I don't believe these properly describe the problem and certainly don't point to a solution. The various immunosuppressive drugs developed since 1990 are used only for the Relapse/Remit phase, so once you've hit the Progressive stage, you might as well listen to alternative ideas.
CONGENITAL: This idea is favoured by Phlebologists and Dr. Sclafani. However, it doesn’t account for the epidemiological variations in geography, culture or gender. It certainly can’t explain the dramatic increase in Japanese MS cases over the past 30 years. However, obviously it can be one factor.
DEVELOPMENTAL: My beginning hypothesis was that stress (of many potential origins) damages the veins in the child's developing body so that once adult the veins can no longer accommodate the blood flow. Defects in the circulatory system impede if not outright block blood flow leading from the brain and spinal cord leading to MS "attacks" and subsequent paralysis. It is for this reason that MS first generally manifests during or after adolescence. Dr. Zamboni himself observed deformities in the veins in the back and neck of MS patients. These areas correspond to Acupuncture meridians which control blood/fluid circulation.
AGING MS: The third type develops with age. There is no reason why veins shouldn't harden and malfunction as a part of the aging process. When the valves in veins draining the central nervous system malfunction, blood backs up to injure the myelin sheath.

THE ANGIOPLASTY CURE has been suggested for these types of MS (Congenital, Developmental, Aging) characterized by varied vein malformations - stenosed (narrowed), twisted, exhibiting stuck or deformed valves, or just plain missing. The Italian phlebologist Dr. Zamboni launched the theory he named CCSVI. The treatment consists of threading a catheter through the affected vein and opening it with a “balloon” . Initially the Internal Jugular Veins, the Vertebral Veins and the Chest Azygos vein were treated. Other veins leading from the spinal cord are now treated as well. Development of the Intravenous Ultrasound has allowed Interventional Radiologists to see what is going on inside the vein, determine the appropriate size of the balloon to open the stenosed vein without scarring, and avoid various complications. Stents have been inserted into veins which collapsed after being opened. (Dr. Sclafani believes the early 50% failure rate in the Jugular vein angioplasty occurred because the balloons were too small to open the veins sufficiently.) However, if the balloon is too large it risks scarring the vein lining tissue (endothelium) which might lead to thrombosis – the vein being closed off entirely. There have been cases where, after the initial “liberation”, the vein closes off again and each subsequent intervention leads to more scarring and tissue damage. Some have experienced little if any improvement. (Not all the veins leading from the spinal cord are treated.) Some have found themselves in a worse condition after the angioplasty than before. (One woman reported that her veins shriveled up into useless dried out structures through which no blood could flow.) Risks include brain hemorrhage, blood clots, and stent migration into the heart. Presumably with experience and the development of new techniques and material the few early tragedies which have occurred can be avoided. (Already use of the IntravenousUltrasound has decreased the risk factor dramatically.)
Some have reported dramatic recoveries, often with stents inserted, at least 2 years after Angioplasty. They have been CURED. (I don’t know the longest post operative success story. Treatments began sometime in 2009.) The lives of some have been so transformed that they now wonder if they should declare themselves free of MS and therefore ineligible for disability benefits.

Nonetheless, while some have been apparently cured, the risks of angioplasty are real. Before rushing into the operating theater, consider first treatment of Types 4) SKELETAL and 5) TOXIC MS.

SKELETAL MS: A misaligned skeletal, bone or dental structure can actually restrict the free flow of cerebrospinal fluid which in turn can compress or impede venous blood circulation. Structural problems can be either congenital or developmental in origin (e.g. accidents.) Recent scientific studies have focused on the interdependent dynamic of brain "fluids", the blood and the cerebrospinal fluid (CBF) which bathes the Central Nervous System. Excess cerebrospinal fluid can actually "compress" or limit blood circulation, hence the interest of Chiropractors in adjusting the Atlas bone to assure proper CBF circulation. If the problem is SKELETAL, angioplasty would not be appropriate. In this case it is not a problem INSIDE the vein but OUTSIDE. Chiropractic, Osteopathic or Dental adjustment may suffice to release the brain fluids flow leading to CURE or CONTROL.

FINALLY THERE IS TOXIC MS.
I include in this category not only known toxins such as mercury in dental amalgams, aspartame, glutens and various food intolerances, but myriad microbes/viruses such as mononucleosis, epstein barr, chlamydia, lyme as well as various metabolic disorders such as toxic "gut" and diabetes. OK that's a big category. One might say I am being simplistic. BUT MAYBE IT IS JUST THAT SIMPLE. Whatever stresses the body in those individuals with a compromised vascular system may trigger the blood reflux into the CNS. Illness in childhood may damage the vascular system, stress including toxic stress may trigger the reflux. Toxicity itself may damage the veins. All these factors may stress the vascular system leading to a venous blood reflux. Detoxification, intestinal cleansing, and appropriate nutrition will reduce pressure on the vascular system as well as nurture the brain and heal nerve damage.
CURE: Some MS patients recover through diet cleansing and nutritional therapy alone. Some may have a "temporary" stress reaction to a toxic substance such as aspartame (or mercury in dental almagam fillings.) The reaction is "temporary" in the sense that once the toxin is removed, the MS symptoms disappear. I have even heard that removing glutens from the diet is sufficient to heal.
CONTROL: Dr. Terry Wahls (see You Tube Minding Your Mitochondria) presents another excellent example. She began her treatment by de-toxifying from the MS drugs which were poisoning her and then optimized her nutrition. Her recovery implies that her veins were not actually blocked, but tensed up enough to cause a reflux. Also, she stimulated her blood circulation by electrical stimulation of the bands of muscles on her back, in other words, the bladder meridian. Optimal Diet/Supplements serve two purposes. 1) to prevent stress on the vascular system which might lead to blood reflux and 2) heal damaged tissue.

In addition to nutritional therapy, most MS patients probably will require treatment to enhance blood circulation to prevent blood refluxes – massage, ayervedic massage, acupuncture, self acupressure, osteopathy, chiropractic, swimming.

Again, to make a long story short, Dr. Zamboni has discovered the problem – venous blood reflux or CCSVI – but not the sole solution. Detoxification and nutritional therapy coupled with circulation therapies and/or skeletal adjustments may suffice without taking the risk of angioplasty.

MS Cure Enigmas.net
(Post Subject Five CCSVI MS Types)