NYT and MS

[Sunshine 2]

NYT had an interesting article today on MS. It said,"I was 26. I realized right then that my dream of being an artist, and the unconventional lifestyle I expected along with it, was over before it began. Four months after my diagnosis, I received my first infusion of high-dose intravenous steroids. In the fall of 2015, under the care of a neurologist, I began a monthly intravenous treatment of medication that blocks immune cells from entering the brain and spinal cord. I travel 65 miles to a site in the Hudson Valley for the infusion therapy."

[Sunshine 2]

Sorry I posted this prematurely. I wanted to addd a question to our board whether they had heard of this treatment.

[flatcap]

I haven't heard of this treatment, so I searched the quote you posted so I could read the article. Unfortunately, it is behind a paywall.

It would be more than interesting to know what drug the author was talking about, but I suppose that is too much to ask of the NYT.

Also of interest would be the reason why this kind of therapy has apparently been hidden from the masses since 2015. Again, probably too much to expect from the NYT.

ETA: I found a way into the article and am reading it now.

[flatcap]

Well, I got through it OK, but the article reminded me of those routinely published in the last pages of the National MS Society's quarterly magazine, Momentum. In other words, next to useless. I agree with the author on her views of the wholly inadequate, for-profit US health care system that is really driven by insurance companies, not doctors, but in my opinion, the rest of the article is fluff.

[Ikoiko]

I didn’t read the article, but it sounds like Tysabri. I was on it for several years before I switched to Rituxan. Everyone should have access to these drugs. They are common.

[Virginia]

I have not read the article either, but I agree that it does sound like Tysabri. I have had a couple of friends who were on it, one was taken off after 6 months, the other one remained on it for a long time before they felt it best to take her off. A good drug for MS is my understanding but can be dangerous.

[agate]

If it was Tysabri, Joy who was part of this board for quite a while died from PML that she contracted because she'd stayed on Tysabri too long, apparently. If I remember right, she'd been on it for about 10 years, and that would have put her at very high risk for PML.

[flatcap]

Ah, yes, Tysabri....and PML. That is precisely why I wouldn't go on Tysabri when it came out.

That, in turn, was why my first neurologist and I fired each other simultaneously. She said she didn't know what else she could do for me if I wouldn't go on Tysabri, and I decided enough was enough. If she would no longer bother to do anything about my exacerbations (prescribe steroid infusions), what good was she?

Well, how much good she was was none so when I got home, I wrote her a nastygram on the messaging system they had at the time telling her that she was "the most pathetic excuse for a physician I ever had the displeasure of consulting." (Those were my exact words; I doubt I will ever forget them.)

Later, the office manager attempted to call me at home, for what reason I do not know. After she left two or three messages, I finally picked up and told her to stop calling me. I didn't even give her a chance to pitch whatever she was selling before I abruptly hung up the phone.

I'd like to say that was my final foray into the world of neurology, but it wasn't. I went through several neurologists at the UW clinic in Seattle, but they were all residents so there was no opportunity to pluck a permanent provider from the crowd.

The next one that came along was a DO practicing neurology at one of the local hospitals. At my first and last appointment, he asked me whether I was gay or straight. I said neither, so he asked me if I was asexual. Say what??? That was no doubt the most bizarre thing I ever experienced in a doctor's office.

Now, exactly why I can't say, but I scheduled a second appointment with him and actually showed up for it. Next, I sat in the waiting room for what seemed like forever and decided to leave and go home.

Probably the best move I ever made, but I wasn't done yet. I left reviews for him on two sites recounting the entire story. Whether that ever made any difference is unclear of course, but I did draw a certain satisfaction from it. The guy shouldn't be allowed to practice medicine, and I thought perhaps my reviews would steer prospective patients away from him — or at least I hoped that would happen.

What I do know is, that DO is no longer employed at the hospital. I wonder if he got caught grooming other patients for sex, and they fired him. Either way, at least he is gone.

(How's that for going off on a tangent? lol)

[agate]

That, in turn, was why my first neurologist and I fired each other simultaneously. She said she didn't know what else she could do for me if I wouldn't go on Tysabri, and I decided enough was enough. If she would no longer bother to do anything about my exacerbations (prescribe steroid infusions), what good was she?

That doctor should NOT have said that. She may have been getting rewarded by the drug company for promoting Tysabri. There was a dustup a while back about the "honoraria" and other goodies that the drug companies were (are?) routinely handing out to doctors. The standard procedure was for a neuro to offer the patient a variety of possible MS drugs. Some time ago, when I last asked, I was offered Avonex, Copaxone, Rebif, or Tysabri but now there are many more on the table. My impression is that the higher-efficacy drugs are offered to some patients but not others, depending on the neuro's approach to treating MS. Some believe in hitting it with the powerful drugs right away, at onset. Others maintain that the less powerful drugs should be tried first, and if they don't seem to be working, they move on to the ones that pack more of a wallop.

And as for this one:

I left reviews for him on two sites recounting the entire story. Whether that ever made any difference is unclear of course, but I did draw a certain satisfaction from it. The guy shouldn't be allowed to practice medicine, and I thought perhaps my reviews would steer prospective patients away from him — or at least I hoped that would happen.

I often read patient reviews when looking up information about doctors and I'm often guided by them. I understand that doctors take those reviews seriously. Of course they do what they can to remove the negative ones but that's not always possible.

[flatcap]

You're right, of course: That psychotic neuroquack shouldn't have said what she said.

In the trivia category, I'll tell you another one. She did her residency here with a long-time local neurologist before he retired. When I first saw her, she was still doing general neurology even though she is an MS specialist.

My first "Whoa, wait a minute here" moment with her was when she told me that MS patients were the biggest pain in the a$$ among the many she saw in her office.

Say what??? You specialize in MS treatment, but you consider your MS patients a burden? I should have dropped her like a hot rock right then and there, but I was too new at it to know what to do. I was scared stiff as much as anything else, plus there was nowhere else to go at the time.

One thing about my former neurologist that might explain her poor bedside manner is the fact that, in addition to her MD, she holds a research PhD. It's only my opinion, but she would probably a be better fit in the windowless dungeon of your typical research lab. There at least, she could take out her frustrations on the lab rats instead of her patients.

ETA: I forgot to mention that I looked her up one time, and she does have a connection with at least one pharma company. IIRC, she gave talks at one or more of their seminars and was compensated for it. This was all given in some sort of declarations document, but I can't remember where I found it.