I can't trust a company that makes its hundreds of billions off sick peoples. No incentive to cure. A cure means out of business.

[1RiskyRich]

Came back last night from a pharmaceutical dinner. Besides talking up their medicine they went all out and got a dietitian to tell us about eating anti-inflammatory food, being that MS causes a lot of inflammation. She did have a section for question & answer. I had to raise my hand. Asked for the pharmaceutical rep to stand with her cause it was two questions & she might better answer the 2nd.

1.

ME - On a scale of 1 to 10. How important do you know or think that eating Anti-inflammatory is the best for MSers?

HER - A 10. And she went on telling me how MS is a disease that causes inflammation and obviously there's no need to add more.

2.

ME - This question is might be more geared towards the rep but your input would be greatly appreciated. How long have we known that MS causes a lot of inflammation?

HER - We have known since the 1990's when we started our studies on MS.

ME - I realize the pharmaceutical companies have our best interest at heart and thank you and them for that. I am sure all MSers would like to say thank you! So please tell us, we were all invited to this beautiful dinner and know that the pharmaceutical companies, especially this one, are on our side, so what foods that was served was Anti-inflammatory?

The dietitian tried to name the vegetables. So I stated to her, Yes, there were zucchini, I must've overlooked that when they breaded and deep fried it.

I realize it's only their job to do that. If your going to put yourself out of integrity, wouldn't you be selling yourself short? That's like getting weight loss advice from an obese person. I believe in

Do As You Do, Not As You Say.

[jimeka]

What hope is there for us? Hope you enjoyed the 'anti inflammatory food' please share so we can all partake, cheers Jimeka

[1RiskyRich in reply to jimeka]

Maybe it me. But I always question everything. Did you ever wonder why every doctor that's close to a cure or solving this MS thing is NOT A Nuerologist? Could it be we are seeing the wrong doctor. I think all the pharmaceutical companies & MS Specialist are way too involved in taking care of the symptoms of MS instead of dealing with the actual problem. The underlying of MS is B & T cells. They reside in the blood. Wouldn't a Hematologist (blood doctor) be better than a neurologist (nerve doctor). Take care of the cells & problem solved. MY example. Lemtrada. It attacks them but it didn't pass for approval in the US till it was available elsewhere. It went from $176,000 to $500,000+. Does it cost more? Is it now better? I don't think so. It's the same mixture. Regular conventional meds are about $60,000 a year. I guess the charge is equivalent to 8 years of conventional medicines. But one still has the other meds that go along with it FOREVER.

[jimeka in reply to 1RiskyRich]

Living in the uk, I never questioned how much everything cost, because everything as always been available on the NHS. It wasn't until I had to have a transthoraxic discectomy and had to go on Lyrica, that my doctor actually said to me, if you knew how much it has cost the NHS for your operation and now for your monthly supply of Lyrica, you are an expensive item. Now I know how much my op was I appreciate the NHS more. Cheers Jimeka, I have paid into it for 40 years.

[1RiskyRich in reply to jimeka]

Lucky you to have the NHS. Do they offer HSCT there?

[jimeka in reply to 1RiskyRich]

I don't know, I see my neurologist next week so I will ask and let you know.

[angelite in reply to 1RiskyRich]

Hi Rich, I'm in the UK too but would have to disagree with feeling lucky to have the NHS ! It has been massively underfunded by government and falling apart for years. It is not 'free' as we all pay into it via tax during our working lives, then when we need to use it, it is supposed to be there for us. However, with continued underfunding it has become increasingly difficult to obtain a GP appointment when needed, nevermind get a referral to see a specialist. I was labelled as 'Functional Neurological Symptoms' a year after suspected brain infection 4 years ago, on the basis of a 'clear' MRI, without contrast, 2 days into illness. I finally got an EEG months later which should have coincided with MRI timing. Slowed waves were passed off as 'normal'.Five months of elevated white cell counts and 2 months of swollen lymph nodes all ignored, in favour of a 'functional' diagnosis. Resulting long term disability not looked into - no further tests, physio denied and signed off with a vague 'It could take years' when I asked if I might improve. No treatment or support whatsoever.

Fast forward to second time around - UTI that would not respond to oral antibiotics. GP seeing my 'functional' label made the assumption I was a 'hysterical female', told me to go home and finish tablet course. I got in touch with medical helpline who took me seriously, thank goodness. Hospitalisation for sepsis, 1 IV treatment with Gentamicin and discharged. Back in ,24 hours later with raging sepsis again - they had not bothered to check my bloods before discharging me so infection levels were not down enough to prevent recurrence. Further Iv's and a longer stay to get rid of it completely. No acknowledgement of my new neuro symptoms/worsening of old ones while there - totally ignored. Mistakes are being made, corners being cut, facts being ignored, tests withheld and unjustifiable 'functional' labels being used, all I believe, in the name of saving money. As a result of my own and other's similar experiences, I have little faith in our system at this point. I believe we will end up with a private healthcare system and the NHS will sadly be no more in time.

Sorry for the essay ! Just needed you to know that all is not rosy in our NHS garden ! : ) x

[1RiskyRich in reply to angelite]

Wow. Sorry to hear that. I was going by the previous comment. I didn't realize it was that bad.

[Royjr in reply to 1RiskyRich]

You know I think some of the same. I look at it this way; all this medication that's out here is all synthetic (not natural). It masks or slow the symptoms of MS but don't cure the disease and some (most) have bad side effects. They want you to inject or swallow this chemical and say you will most likely feel better, not that it will remove the disease. When you feel bad from the first chemical, then you have to take another drug to feel better from the first. This cycle never ends. It's all about money.

If they develop a cure for any disease, they'll have to stop selling that drug. You know how much money that involves? MILLIONS!!!

If they really publicize that there're natural, less expensive remedies, the economy would turn upside down.

[1RiskyRich in reply to Royjr]

A cure means there will be a traffic jam at the unemployment office. They're still pissed at all the money the lost with polio. Got that from the comedian Chris Rock. Look it up on YouTube. Chris Rock Doctors and drugs. Funny but I can see it being true.

[dmaskal1 in reply to 1RiskyRich]

I worked in drug development in the pharmaceutical industry. Many of us had the same concerns many times. Ugh.

[Hidden]

1RisyRisk, it's MSFighter responding back to your post. I have been to dozens of dinners given by pharmaceutical companies with guest speakers like Ms specialist, doctors, and dieticians. The fact that the pharmaceutical companies are pushing their therapies cannot be argued. They are. And I also agree with the fact that they make lots and lots of money developing, manufacturing, and distributing their MS drugs too the people with MS who need them.

What I would like to interject here is a way or ways to look at every situation. I believe there are two ways to go through life. Looking for a negative situations or issues or or looking for the positive ideas and values that come out of every situation. I realize that different people's MS goes down different paths. It would be safe to say that almost that no two people have the exact same experience or issues or reactions with their MS. Simply because a new MSs therapy is not effective for me does not mean it might not be effective for hundreds of other people with MS. So I cannot become negative with the pharmaceutical companies continued research. I do not like paying for the expensive Ms treatments and drugs any more than anyone else does. But whenever I have needed assistance with payments I have gone to the pharmaceutical company reps and I have been blessed by receiving payment assistance with my therapies.

Sometimes you have to realize that certain things are out of a person's control. When that happens I don't blame them or say their integrity was affected. At these dinners the menus are set the same for everyone or you have a limited choice of items to choose from. I have been to dinners that had 40 to 50 participants. I understand that if restaurants let 40 to 50 extra people choose their specific side or they're entree they would probably compromise there restaurant supplies. That would hurt the diners in the restaurant that are not attending the conference. The material the dietitian was talking about, the Mediterranean diet, was valuable information to be had by all the participants. The restaurant probably did not give her/him the option of a mediterranean-style entree or meal. I simply cannot think that her integrity was shattered because the diet she talked about was not offered at the conference. The information was good for all as well and that's how I would have looked at it leaving her Integrity intact.

Rich, I hope you understand I am not trying to pull your post apart. I was simply offering different ideas or way of looking at a problem that we all face. I thought it only fair to allow everyone else on the site think about the good that pharmaceutical companies do as well as the negative that you pointed out. I personally feel blessed that they are therapies today that were not available even 20 years ago. And as a result many of us with MS are pushing our disability back and enjoying life to the fullest with the pharmaceutical companies research and assistance.

[1RiskyRich in reply to Hidden]

Wow, with all due respect, I feel like I should be thanking them now. I had to go abroad for a treatment to halt my MS. I have not done my $19,606 every 28 day infusion since February 2, 2016. Every MS treatment is funded by pharmaceutical companies EXCEPT this one. It is done 1,000's of times a year for another disease. It just so happen that the female who went for the treatment, in the US, also suffered from MS. After the treatment for the initial disease, all her MS symptoms we relieved or gone. Unfortunately she passed away from complications of her primary disease. If the big drug companies REALLY wanted to see us healthier, the would fund this treatment. Or at less find a way to make money off of it somehow. And by the way, there is about 7 restaurants within a 3 block radius. 3 of them serve nothing but healthy food and the restaurant Harvest serves nothing but organic food. The restaurant they picked was the most expensive & the most unhealthy one. I totally understand that the restaurant was not her choice but she knew exactly where it was before she agreed to it. In my opinion, the event would have been best of no dietitian was there. They should save the dietitian when they can all lead by example.

[Hidden in reply to 1RiskyRich]

Rich you to make some very valid points in your reply. But did you consider this. Perhaps the healthy restaurants that were within the 3 block radius didn't have the space or separate conference facility of the size that the MS drug manufacturer required and simply could not accommodate their needs. Or mayhap they simply weren't interested in accommodating them. I do understand that a lot of these dinners are held it very expensive restaurants but since the drug reps are paying for the meals that has really never bothered me personally.

In regards to the Dietitian speaking at that restaurant the drug manufacturer company had probably already contracted with the dietitian to do so many MS presentations with the Mediterranean diet in their area. The dietitian probably had very little say over when and at which restaurant she did her presentation. To me, her message would still have been valid, but to each their own. I've tried to follow the Mediterranean diet ever since it was introduced to me at a MS Workshop I attended a couple years ago.

I totally agree with you that our testing and approval system for new therapies goes at a snail's pace. I really never thought that this was the drug manufacturer fault, I put more blame on the FDA then on anyone else. When treatments, therapies, and new drugs are offered across Europe, Mexico, and in South America I do find it very disheartening that it takes us months and months and sometimes a year or more to get the exact same therapy in the United States.

Please understand I was and am not trying to pick an argument with you Rich. I was simply showing an alternative viewpoint. I hope our interaction sparks interest and replies from other individuals in our chat room. That's what makes our chat room so special. We offer a safe haven to exchange ideas from different viewpoints. And better yet these viewpoints, ideas, and replies are not done by the experts in the field. They are done by our comrads in arms, the people that are actually battling this dreaded monster, our common enemy, MS.

[1RiskyRich in reply to Hidden]

Your absolutely right. The FDA does take its sweet time. I believe there's a reason why. You do realize that the FDA listens to the lobbyist as to what should and should not get past. The best lobbyist, we can all agree, belong to those with the biggest pockets. I'm sure every hundreds of billion dollar a year business can afford the best. Personally, I went abroad for treatment but have a lot of MS friends that would like to but don't for whatever reason & I went to this dinner as a guest. I am from this area & have been to most of the restaurants in the area. Theses all have catering sections that can accommodate up to 300 people. The 90 people that were there would've been no problem. The treatment that's been going up since the early turn of the century keeps getting denied. It won't get approved till 2022. I figure big pharma has about another 10 years of big gains. When the treatment comes out in the US, I can't wait to see what that charge will be. I know what it cost me. It went up & passed in other countries and its funny how those countries have no members here. That alone makes me think! Your right, I would love to see what other pro-active people think.

[RoyceNewton]

BEAUTIUL COMMENT I LOVE IT wish I was there. Since when was it pharmas goal to cure us? It is there job to maximize profit and increase shareholder value. Think Epipen. We r just wonderful quiet mostly female cash cows. Otherwise they would have found something concrete apart from " its inflammatory a long time ago. Yes on a good day I am a nice obedient cash bull nearly 20yrs I think in.

[ItsChris]

Dearest fellow MSers. We all know the score when it comes to treatment versus cure and the associated potential for profits. We've seen the EOB's, costs, and everything between. With this knowledge, I went through a period of being disgruntled. Then I had a moment of clarity:

I bought their stocks. 😁

[Jesmcd2 CommunityAmbassador in reply to ItsChris]

OMG ItsChris l love it lolol awsome advice and makes perfect sense to me

[ItsChris in reply to Jesmcd2]

Hi Jesmcd2.

What can I say? We need to take these lemons and do something with them, right?

[Jesmcd2 CommunityAmbassador in reply to ItsChris]

Exactly! We pay the price, why not get paid back. Lol