Isn't it maddening ? / frustrating ?

[JerryD]

Isn't it ridiculous and maddening that there aren't any FDA approved treatments (medications) to treat Primary Progressive MS. I have been on this board since 2009 and it sickens me every day (sometimes three times a day ) that this form of the disease has gotten so little attention from the pharma-medical practitioners around the world. I search the internet every day and come up empty. I have PPMS and have probably had it since before my 2009 diagnosis.
Of course, I feel very badly for the people who have had this Monster longer than me. But, I feel resentment for the practitioners ( doctors and scientists and researchers ) that have devoted their lives ( or so we are made to believe ) to the discovery of a so called 'cure'. It is really difficult to accept that (absent some medical miracle ) I have a very dismal future. Just venting. What else is there?

[Marco]

PPMS is rough

Have you ever tried or considered LDN? I know some PPMS patients that take it. I know the LDN basics, but Knuckle is one of our resident experts on LDN.

http://www.express.co.uk/life-style/...erosis-effects

What saddens me is the large number of patients that have medication options, but select not to even try them.

[JerryD]

Thanks for the response, Marco. I do take LDN daily. I have been taking it for 5 years or more. But, you know that LDN is not really a mainstream medicine. I want the mainstream medicine folks to get themselves in gear and find us a 'cure'.

[J-Bo]

Answer and a question

Hi Jerry, and yes, it's maddening. Another thing that's maddening is when you tell people that you have MS, and they say "Oh, but they have all those wonderful new drugs for that!"

Question: Do you think the LDN is helping you?

[JerryD]

Yes J-Bo, that's what I meant by propaganda. The drug companies feel so good about their products and the public perception is not always the whole truth. I don't mean that there is some kind of deliberate deception being spread around. It's just the way that rumors get started. And the only way to put a stop to the misunderstanding is to solve the mystery and 'cure MS'. 'Easier said than done'.
And yes, I think that I get some benefit from taking LDN.

[J-Bo]

And isn't it interesting what's coming out now: that opioid drug manufacturers are giving money to anti-drug groups to work against legal MMJ? I don't know if you have a lot of pain, but I do, and I live in a state where it's illegal. So to get pain meds I have to pee in a cup every month to prove I'm not using something that would actually be a lot safer. Infuriating!

[JerryD]

It's like I said. Maddening, frustrating, infuriating !
Do you remember the AIDS / HIV problem that came to the fore in the 70's-80's. It took medicine about 20 years to get a handle on that 'plague'. I am not a scientist and I am willing to be wrong but I think that MS has been a medical mystery for more than twice as long as the 'war on AIDS'.
I am sick of being sick. And I am sick of everything associated with MS. Nothing short of a 'cure' will satisfy me.

[J-Bo]

Righteous rant.

Oh, hey, I see you live in the same stupid state, er, commonwealth that I do. You have my sympathy.

[Zuzus11z]

It's like I said. Maddening, frustrating, infuriating !
Do you remember the AIDS / HIV problem that came to the fore in the 70's-80's. It took medicine about 20 years to get a handle on that 'plague'. I am not a scientist and I am willing to be wrong but I think that MS has been a medical mystery for more than twice as long as the 'war on AIDS'.
I am sick of being sick. And I am sick of everything associated with MS. Nothing short of a 'cure' will satisfy me.

AIDS went BIG & Global really quickly - it scared enough people that enough people got into their lab coats and got busy. We're just ~2.5 million really frustrated people...the ka-ching only crowd. At this point I would be happy with reliable preventative medicine that clocked in at 85% effective in halting progression rather than this 35-40% number everybody wets themselves over.

[pb909]

yes, very frustrating.

Have it on my list to ask my Neuro about LDN at my next appt. Anything that could possibly help would be great.

[JerryD]

pb909,
If you have been following LDN posts on this board, you know that you have about a 50% shot that your neuro knows anything about LDN. Some neuros prescribe it, some don't. I take it and I think it helps me. Good luck

[poppydarling]

Isn't it ridiculous and maddening that there aren't any FDA approved treatments (medications) to treat Primary Progressive MS.

...and SPMS. Most of us are going to progress, end up in similar places, and I'm astounded at the big fat "see ya!" the pharma companies give us after taking $50-90K from us annually for decades. And for mostly false hope, too.

And now we sit here, getting worse while being basically abandoned by the medical establishment? I gave my doc an earful last week -- he's an MS researcher, too and had nothing to say but "You're right."

[Windwalker]

AIDS went BIG & Global really quickly - it scared enough people that enough people got into their lab coats and got busy. We're just ~2.5 million really frustrated people...the ka-ching only crowd. At this point I would be happy with reliable preventative medicine that clocked in at 85% effective in halting progression rather than this 35-40% number everybody wets themselves over.

Thanks for saving me the typing. Love the last line

[JerryD]

Thanks Zuzus11z. We are on the same page of the 'frustration' bible. I don't believe that there is the same 'urgency' ( like there has been for for HIV/AIDS) for an MS cure, across the board, as the 'big pharma/medical establishment' would have us believe. I just feel that we are expendable lab animals to the research community or even 'cash cows'.
One would think that the health insurance industry would take a sizable interest in a 'cure', since they keep shelling out dollar after dollar for medicines that 'treat but don't cure' anyone. It's like putting gas into a car that only goes one block on a tankful of fuel.