Wow, what an emotional roller coaster! Just imagine being told you have PML, and making plans for after you die, then find out, "No, you don't have it". That is so irresponsible on that one doctor's part. I would be VERY angry!!!
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What a shame that doctors are making these statements when they don't know what they're talking about.
It is really important to have doctors who know their field and who don't pretend to know something they don't know. I'm always encouraged when I hear a doctor say, "I don't know."SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.
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Originally posted by BBS1951 View Post...
The board seems to be shrinking?
The number of guests lately has been around 200 at any time of day. Just now it's at a mere 145 but that is far more than we used to have. I'm not sure what accounts for the increase in the number of guests.
I first noticed it a few weeks ago.
If it's the number of posts, there may be fewer people posting lately because a couple of new people have appeared. Regular posters sometimes hang back when there are new people--maybe waiting to see.SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.
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I'm just guessing but maybe people try to figure out if a new person is someone who's been here before, someone they already "know," registering under a different user name.
Most people doing that would say that they were here before as Joesixpack or whatever, but there are occasionally those who don't say that. Unfortunately there have also been some who come back under other names because they got a bit troublesome previously--and would prefer not to be recognized.
Also, maybe people just naturally hang back with a new person in the room. You sometimes want to wait until you know what a person's interests are.
We can't insist that people introduce themselves. People are free to register here and not post at all, or to register and start posting without saying anything about themselves. At least that's how I remember this being explained to me a while back by a moderator.
There are many people who come here for information they want but they want to be as anonymous as possible--for many reasons, most of them pretty good ones.SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.
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Look at the big brain on Agate!
I think all of those are true. I've been coming here...forever, and have seen many come and go for various reasons. But others have been here as long, or longer than I have."Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."
Albert Einstein
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Originally posted by agate View PostI'm no doctor either and don't play one on TV but I have noticed in the reports on MS that I look at that the experts are favoring going at MS very early (at onset) with the big guns like Tysabri or Ocrevus. These drugs have been shown to be at their most effective at that time.
Also, I've noticed how much attention is being given to pediatric MS lately. It does show up in the very young, even in pre-adolescents.
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Originally posted by Virginia View PostThanks for letting me know that Ocrevus can also cause PML. Somehow, in that 40 to 45 minute interview that I watched with a Doctor whose name I can't remember, but is well know, that escaped me. I wonder if he mentioned it. He seemed to give almost no side affects that I can recall.
Ann, I also had a friend who was single and in her 40s, who was on Rebif. She wanted to date so she changed to Tysabri due to site reactions. I heard from her several years later and she had had a real scare. Early one morning she got a call from her Doctor in person asking her to come right away to his office. She went and they told her that there was a good chance she had PML. She told me that she cried and cried and she wrote letters to her two college age daughters for them to have after her death detailing what she wanted for their lives. Blood work had to be sent off somewhere and when it came back she did not have it. Anyway, she still stayed on Tysabri. I haven't heard from her in a long time. I wonder what happened to her.
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In reference to the Doctor telling my friend that she might possibly have PML, he almost had to. He had to get her back in his office very quickly after a routine blood test was done, in order to do another one that needed to be sent off somewhere. It was the wait after the second blood test to get results that she freaked out. I think she even made some of her funeral plans so that her young daughters would not have to. I don't think she had told them when she talked to me. I had wondered if she ever did. They probably would want her off of it and she didn't want to do that.
By the way, she got her wish about finding someone to go out with. She met him at the infusion center while they both were getting Tysabri infusions.Virginia
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Well, the weekend is here...again...and I'm doing my usual, nothing. My brother just emailed that he will call next week. He's off work starting Wednesday.
My shoulder was hurting this morning which is why I take the Tramadol. But after taking 3 instead of 2, plus 3 Ibuprofen, it has FINALLY stopped.
It looks like it's cheesy Sci-fi movies on TV all day, so that's what I'll be doing. Everyone have a great day!"Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."
Albert Einstein
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Howie, I went out today. So I can't say that I did nothing. I went to Hallmark shop, grocery store, drug store and I am not sure where else, but that doesn't sound like enough because I was out my usual 3 hours.
I am suppose to go to dinner with two brothers and one sister-in-law tomorrow. I am feeling awfully tired tonight, but I want to go because I didn't go last week-end. My Niece called one day this week and asked me to her house for Thanksgiving. I told her I could not make it. My youngest brother (her Dad) called yesterday and said he would pick me up. But they eat right at 12 on the dot and I am still sluggish until at least two to three. I never eat at 12. I have just a little breakfast earlier and then my yogurt about two to two thirty. I just can't get them to understand that this really is what I have to do in order to have even a few decent hours in the afternoon and evening. I wish I could go, but it is what it is.Virginia
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I so understand your schedule, Virginia. I get up when I get up. Now, that is usually around 9:30 AM. Then 2 coffees (my energy) and a yogurt and dry granola when I am ready. I often don't have lunch until 4 PM.
Peter is the only one who truly understands sleep, rest and energy.
ANNThere comes a time when silence is betrayal.- MLK
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