MS seminar I attended today (a bit OT, some relevant)

[Guest guest]

A wonderfully mannered neurologist from America was the key speaker

today at MS seminar here in Sydney, Australia. I arrived late (about

half way through) and I am very bad with names, but I think it was

Bob Burke of NMSS in America. Graham?? can you help with his name?

Although I missed alot, what I DID get out of the seminar today was

the fact that no matter what medications, CRAB or Complimentary

alternatives, we are all going to react differently. This goes for

all other conditions of course.

The Neurologist divided the patient's reactions to any medication

into groups.

1. Super Reactors - us who react possitively and very well with the

desired results.

2. Reactors - us who just react enough, see some improvements but not

the optimum.

3. non reactors - those of us who do not react positively at all.

There was one more group but I didnt take notes, so its up to my

memory, sorry people .

He mentioned Apoptosis (cell death) and that no matter how well

someone feels or how early stage their MS is, they MUST start a

treatment immediately to delay or prolong future dissability. While

some cells may heal themselves, after inflammation, they are destined

to a short life and cell death, whereas in a normal cell, the life

can be 200 years long.

While I noticed the interferons got a very big mention, the neuro

spoke about all available treatments and we, the audience, asked alot

of questions. A couple of people cornered him before the talks

started and mentioned LDN. He listened, and then he repeatedly got

the name of low dose Naltrexone wrong and kept getting corrected.

I put my hand up and told him and the whole room that I have been on

Naltrexone for 5 weeks and how wonderful I feel and that its not

placebo. He congratulated me, and expressed how pleased he was that

I was doing so well. He then proceeded to tell the group that he has

heard anecdotals of people getting up out of their wheelchairs as a

result of using many other medications other than CRABS and the

general opinion he had was. What ever works, go for it, but just be

aware, be careful, be informed and know how things interact with each

other when trying combination therapies. He was concerned, however,

about people taking on one hand, immuno-suppressants and then jumping

to immuno-enhancing as the extreme was confusing for the body.

He also mentioned what a good health care provider or neurologist

should do for patients.

They should encourage their patients to report the bad side effects

and not only the good effects of any drug.

Neurologists should always express their opinion of a drug.

They should listen and understand their patients wishes and offer

advice and support. He said he is well aware of the amount of

patients that keep information of what else they are taking as

treatment from their doctors for fear of being shunned by their

neurologist. This was a bad reflection on the neurologist and their

ability to build a good repore with their patient.

After the meeting, I spoke with the MS society of NSW's Chief

Executive officer, Bill Northcote, and said how the MS Society should

fund a trial into Low dose Naltrexone - and he bluntly said, 'ask the

drug companies', and I said it wont make them any money, he just

said, 'Oh well, then I guess thats that then " . Then when i said I

will write a letter to be published in the MS Magazine to make more

MS sufferers aware of LDN, he said " Oh I wouldn't do that If I were

you, its very dangerous to tell other people to use a non-approved

method of treating MS and I doubt that the editors will allow a

letter of that sort to be printed in the MS Magazine "

Then I assured him that I was just going to write about MY

experiences with LDN, and she just looked at me cautiously, like - oh

sure you will (NOT). He expressed the MS Society will not risk

litigation and he was very rushed and walked off.

One thing is for sure - the MS Society and now, this prominent

Neurologist will have Low dose Naltrexone in their minds for sure

now. Did my little bit for the cause, hehehe

Friday