Whitewashing MS

[Sunshine]

An article on a local MS walk quoted the sponsoring neuro as saying, "...in the past 25 years, some very effective therapies have been developed. 25 years ago, 85% of people with MS needed assistance with walking or were wheel chair bounds today 80% of those same types of people are living normal lives!"

This annoyed me. 80% living normal lives? Is he blind? Is he not listening to his patients talk about the erosion of their abilities, about their losses and challenges?

[Cat Dancer]

I think if I were diagnosed today...and started on one of the therapies immediately....I'd be in a much better place than I was when I was diagnosed in 1983. Those of us who have struggled with this disease for years didn't have the benefits of the therapies, and were then and are now too disabled to benefit much from them. I do know younger people recently diagnosed who started on a therapy right away...and other than having to take a pill twice a day (or whatever their particularly therapy calls for) are just fine, going about their lives without any sort of complications. Sure, an exacerbation tomorrow may put them in a chair, and as they age they may encounter increasing difficulties.. but for now, their lives are pretty "ordinary". The 80% might be high...but its certainly better than it was 25 years ago.

Many of us on this board right now are also having to deal with issues of aging, and what that does to an already disabled body. Not pretty. I sometimes find it hard to sort just which "problem" is causing havoc today...having MS for 30 plus years, or being 70.

[agate]

BBS, I'm not sure where the neuro got those figures. Somehow they don't sound right to me either. There has been a documented improvement in the condition of people diagnosed with MS since the disease-modifying drugs came along, but I think this neuro drew some of those figures out of thin air.

[Howie]

I'm one of those who has never taken any MS meds, and don't regret the decision, or want to start doing one. The ability to walk seems to be the crowning achievement for someone with MS.

But put me in front of a crowd, and notice I seem to stare at one spot in front of me. And as I walk, I seem to be drunk, weaving all over the place. And anytime I get close to anything solid, I keep my hand on it as I drag it along to help with the balance.

So I could start a medication, and they would talk about how well I'm doing on it after having MS since 1998. We wouldn't mention I just started the medication. I might make a fortune....well, we could. Don't forget the drug companies.

[Virginia]

I think, on the whole, we are probably better off than we were many years ago. Having said that I believe this Doctor is putting "lipstick on a pig". We still have MS. Some of us older ones are certainly more disabled than younger ones. However, that having been said, I was wearing 3 inch heels in my late 50s and did not know I had MS. There had been flare ups of things that would take me to the Doctor, but no one ever mentioned anything neurological. I do believe that even though I was much older than many on here before I was diagnosed and started the DMDs, I have done better because I did choose to start one. For one thing I was having episodes of optic neuritis and the drugs ended that for the past 15 to 16 years. That in itself says we are better off than we were before. However, he made it sound like we were living the "healthy, good life" of the young.
Well, maybe all his patients are young. It is a known fact that most of the time the young do better than older people.

Statements like this by a Doctor just make me angry because it is so misleading to ordinary people who have no or little knowledge of MS.

[jendie]

My RRMS days started in the 1970s, they didn't recognize pediatric MS back then. I'm guessing I progressed to SPMS after the birth of my youngest son in 2001, but the MS specialist didn't tell me that.

I've had this disease for more than 40 of my 48 years. It seems that whitewashing is what a lot of doctors do and a lot are in the pockets of big pharma. The MS specialist I've been seeing pushes medications like a drug dealer pushes illicit drugs.

He was giving me the hard sell on Ampyra, something I'd already tried and got no benefit from.

[Lazarus]

My RRMS days started in the 1970s, they didn't recognize pediatric MS back then. I'm guessing I progressed to SPMS after the birth of my youngest son in 2001, but the MS specialist didn't tell me that.

I've had this disease for more than 40 of my 48 years. It seems that whitewashing is what a lot of doctors do and a lot are in the pockets of big pharma. The MS specialist I've been seeing pushes medications like a drug dealer pushes illicit drugs.


He was giving me the hard sell on Ampyra, something I'd already tried and got no benefit from.

Hi Jendie,
I wanted to add this note....
I take Ampyra and have been for 4 or 5 years. It has a pronounced benefit on my walking. When I miss a dose I am alerted because my walking gets very difficult. There's the frustration. Some drugs help some of us and not others.
I am glad I tried ampyra. It helps me a lot. It did not help my good friend though. Like you, she stopped taking it.

Trial and error.

[Sunshine]

Yes, lipstick on a pig is a good metaphor. He does a disservice to his patients with this kind of statement. Yes, these meds are better than what was available 30 years ago, but living normal lives? It's like those glossy photos on the pharma brochures showing us rock climbing, doing iron man challenges etc.


This doc was the first neuro I ever saw with my first attack. He told me it was an infection related event and that the continuing symptoms were due to stress and he was 100% sure it wasn't MS.

This is the same doc who told me I needed an LP. It scared me, so I said No. my DH was there and said, "Honey you gotta do this", so I relented. The LP came back abnormal but equivocal for MS. The Doc then said, "well, I knew it wouldn't be MS but you insisted on the LP"-- will never forget that comment. I packed up and sought an expert at UMiami and then Dr Vollmer at Yale,before settling in with a different local neuro for the past 17 years.

[Parsi]

Both of those figures seem high to me, but I have nothing to back that feeling up. Yes, the outlook is better, but he is definitely overstating. And he's completely ignoring the cognitive aspect.