is it all about the blood brain barrier? Seems like there are drugs out there that like to change how the bbb operates. Been reading on some mad sites (as usual) that theres ways you repair the blood brain barrier? That this might help? Anybody looked into this before?

bbb is a lot to do with why people go gluten and dairy free but dont ask me why

dr ashton ambry did some work on this

Thankfully, researchers who do understand the bbb have been looking into its role in MS for years.

Faulty bbb responses are definitely involved in MS, but they are not the whole story.

Anyone claiming that they have a wonder treatment or supplement that can change how the bbb operates and thereby help your MS is either deluded or a con artist. It just isn’t that simple.

For science you can trust, have a look at the multiple sclerosis research blogspot:

Karen x

[quote=“Pat”] I refuse to take DMD’s. That’s all I can safely do myself. Pat [/quote] The juxtaposition is breathtaking. Should we avoid everything we don’t understand?

shakes head in disbelief

I was going to reply but thought better of it… I wouuldn’t know WHERE to start in the face of that…

Except to say this: Do you never trust your car to a mechanic or have you made a full study of the combustion engine first?

You don’t need to fully understand the blood brain barrier. No one is expecting you to be a cutting edge research neurologist. But why not be grateful for their expertise and benefit from the knowledge that medical science has given us to give yourself the best fighting chance against MS?

You don’t have to do it yourself…



I have read a lot into the bbb. Their are theorys that small particles of food get into the bloodstream and damage the bbb. Letting in your white blood cells that attack myelin. They are theorys tho. We dont know what exactly ms is. Is it a damaged bbb or is it the immune system making the wrong type of antibody or both. there are breakthroughs in stopping the immune system making the wrong cell in mice Breakthrough nanoparticle halts multiple sclerosis in mice, offers hope for other immune-related diseases -- ScienceDaily

If we were mice we would be cured.

Took my first dose of avonex yesterday, today i have the headache from hell. If it was any worse i might take your stand on dmds. We have to be our own expert with our ms, its so different in each case.


I had a severe allergic reaction to Avonex too Pat. And to Betaferon. My neuro wasn’t game to try me on Rebif after that as it is one of th same drug group. I had anaphylaxsis to all the Interferons. It is very rare and, I agree, very scary

Then to top it off I found out I was also allergic to Copaxone

But I didn’t give up. For me the thought of leaving the MS to gallop on its merry was totally unchecked was more terrifying than the possibiltiy of another allergic reaction so I was started on Cladribine, the first oral drug, that sadly Merck then pulled from the market… GRRRRR. I wasn’t allergic to that one

Cladribine, interestingly, was the first drug released that worked by preventing lymphocytes crossing the BBB and therefore reducing the inflammation in the brain.

I am now waiting for BG12 to be released and can’t wait…

Having an allergic reaction IS bad luck, I agree but there are so many new DMDs on the market now Pat that work quite differently to the Interferons like Avonex that it might be worth talking to your neuro about it again.

All the best,



If you take some paracetamol or ibuprofen 1/2 an hour before you inject and then every 4 hours afterwards for the next day you should avoid or at least minimise the headache. Sadly ‘flu-like’ symptoms are a pretty common side effect of the interferons…

But don’t quit on that basis. Lots of people will give you tips on managing it if you start a new post on Avonex and headaches…

Take care,


Hi all, As a person with PPMS, I sometimes get very wistful when I read about the DMDs all you RRMSers have access to. There are two drugs Amiloride and Phenytoin which look like they might help us - they are not new drugs but ones currently used for other medical conditions like high blood pressure. However, they are not readily available to treat PPMS yet. I have tried LDN and it didn’t help me! Here’s hoping that we will soon be helped by something! Teresa xx

the best bet diet is based on this theory. i tried it but because i couldnt eat grain or dairy i ended up losing far too much weight.

diseases like multiple sclerosis parkinsons and alzheimers are said by some to be connected with bbb defects.

bare with me i dont have a degree in neuroscience but my understanding is that inflammation in certain areas can cause the bbb to become more porous? like its easier for toxins to access the brain?

To me, the very fact that tysabri has any success depends on the blood brain barriers involvement in this disease

Thought this might be interesting, its an idea about a proposed mechanism relating to blood brain barrier defect

howd you get links to work? copy and paste? am i missing something?

Hi Raymond

Assuming that you have the Forum page open …
The easiest way to get a working link into a post is to open a second tab in your browser …
Get the webpage you want open in that …
Copy the URL from the address bar (click/highlight and wipe) …
Go back to the first tab, and do a simple paste (CTRL + V) …

This should be quicker than it took to type.


thats the way i tried to do it, copy and pasted, its the right address? im confused now

Another “mouse doctor” view on this:


ano but all we’ve got is “mouse doctors” to keep our hope alive, think theyres a few legal issues in the old human experimentation avenue :stuck_out_tongue:

I still think it’s interestin stuff to read about and to try to understand, Think sooner or later one of these wee clues will pay off.

All it takes is the right kind of eyes to notice something

hiya raymond

u just reminded me of something-the real magic lies in not seeking new landscapes but in having new eyes. something my mum told me when i was 17ish,in fact it was a poster on the back of our loo door!

and i believe you are right-the answer is there for all to see-we are just missing the obvious. i have my own theory as to why i have ms-i have no idea if its relevant to all so will shut up now!

ellie x