Looking for old board members, if you can please check in

[flatcap]

soul, I hope things work out for you in that regard.

[soul]

As do I flatcap, because at times I feel like I am going crazy
Tears are not enough, sanity is what I strive for
soul

[Virginia]

Soul, now that you have talked to your ex and can kind of put a timeline on things, do you feel there is a good chance of you doing something about this as far as being reimbursed for mental pain and suffering?

I wouldn't want my family to read about your reaction to being in the trial. I can just hear my two brothers saying "so that's what has been wrong with her for the past 20 years". LOL I have been on that drug for more than 20 years and credit it with being one of the reasons I am still even minimally on my feet. It just goes to prove once again that all our bodies are different.s

[soul]

No doubt Virginia, it all comes down to genetics, with that said its complicated
soul

[agate]

Virginia, that's an idea that might be worth looking into, it seems to me. I don't know much about taking part in drug trials but there is risk involved, and I'm sure that the drug companies are eager to protect themselves from any claims of harm that might have been done by their trials, but there are circumstances where someone, like soul, might have a very legitimate claim.

A lawyer would be handy--Is legal aid still a possibility? I used legal aid a number of times over the years but haven't looked into whether it's still available.

[soul]

Hello, I had coffee with an old friend, my X-wife, from the conversation she basically told me I was going crazy late in year 2- 3 on low dose, in conversation I had a few memories come back, I remember being woken up, by her, I was basically walking into the wall in the middle of the night sweating and shaking, this happened more then once I believe it was more then 3 times. She woke me and pretty much put me back to bed. And the thing is I went through that in my waking hours but during the day time I would be angry sweating and shaking in anger, this make me wonder, was I going manic in my sleep?, I do remember waking basically in the corner of a room walking into the wall. This stuff is screwed up and upsetting, there’s more I just have to slowly pull it out because it seems to come in dribs & drabs.
soul

[agate]

That sounds really grim. These sleep-walking and night terror episodes happened while you were in a drug trial and then stopped when you left the drug trial?

I've heard that some of the MS drugs can do a number on a person in quite a few ways. I was really depressed during my first year on Avonex and I knew of other people who had had far worse experiences with the interferons--and with some of the other MS drugs too.

You could have been badly injured while walking in your sleep.

[soul]

Hello agate, those trials those drugs, it wasn’t until I had quit (IFN) in Aug. 13th 2012, it took about 3 years before the manic episodes slowed down, during that time I knew people who were on Rebif to deal with their Hep C, and I started realizing that this drug was causing anger issue’s. So basically I started asking the people I knew who had used it for MS & Hep C if they had experienced any anger issues, I am going back about 2013, I was at a convention with a friend in Toronto who had done the protocol for Hep C, we shared a room together and I asked him, about anger while he was on drug, he was really upset by my question and his answer, I still didn’t understand my own situation because I couldn’t remember other I knew I had been angry while I was on drug, but that was it, I couldn’t remember anything else but the anger. I was having flashbacks back then but I didn’t understand why and what they were and basically I would toss in my sleep meds, in hopes that tomorrow I would wake a happier person.

The Manic episodes became apparent again as I started looking at the drug on paper, at that time I was focused on the Endocrine system as a friend who had been part of the BETASERON trials who had been a singer I believe Opera, said to me BETASERON had fried her Endocrine system and she couldn’t sing anymore, and some of you may remember her she was active on this board she wen’t by MAES, I used to try to visit the odd board member from this board when I lived in the US, her story was eyeopening to me back then I think it would have been around 2001, we met in the southwest, I stayed with her and her husband for about a week, but back then I was all about the drug, as other MSer’s would say to me you should be pictured on the front of the box.

I was going through anger issues but I never would show it around aquatences.

So here to Maes, she is surely missed by old board members that includes myself

Soul

[Virginia]

Soul, is there any way you could hire a lawyer. That is probably the only way you can do anything about any of what you think might have happened to you. At least, that's the only way I know.

I remember Maggie Mae. I met her in person. I don't remember Maes. That doesn't mean she wasn't very active on here. For a lot of years after I joined I was still working and socializing a lot. I wasn't as active as I have been for about the last 10 years.

What is your situation now as far as your mood swings? Have you pretty much stabilized?

I had more trouble with Avonex than Rebif. I think it was because when I was on Avonex it was given in one shot a week and given differently than what it is now. That was a long needle and it was kind of a production giving it.

[agate]

Yes, those long needles! After a while I arranged for a nurse to come once a week to give the Avonex shot because I just wasn't getting it right and was causing too much bruising.

soul, I'm sorry I don't recall anyone named MAES here but there were so many people here that I wasn't aware of some of them or else my memory has faded. I do remember a Maggie May though.

MAES was an opera singer? I think I'd remember that. There were threads every day that I never got around to reading. The board was so fast-moving back then, and I am slow.

[soul]

Good morning, Virginia I signed papers releasing Serono of any responsibility to me, in year 4, I was told to sign or the trial was over for me. Thats when I went to high dose, so do I have a rite to go after them I don’t know, to be honest, I belief the Chief investigator and drug coordinator knew I was going through as in the Mania, I really don’t know. I remember freaking out on the phone telling them about the severe side effects I was experiencing, and telling them to pull me out of the Data set, as far as I know they didn’t.
Yes agate I remember Maggie if it was the Maggie from England
Soul

[Virginia]

The Maggie Mae that I met lived in Florida. However, I am not surprised to find out there was a Maggie in England. I liked it when people from England and I think one came on from The Netherlands or Sweden. It was an interesting board back in those days.

[agate]

We were strictly told that we couldn't use the board for research purposes, and so I hesitate to mention this because some people might think of it as research but it really wasn't.

Back in 2001 I was so overwhelmed by the size of this board, the number of people on it, that I felt I couldn't possibly remember everyone, and so I made an index card for each member who posted unless it was someone who hardly posted at all. I still have that huge pile of index cards, about 2 inches high. I gave up on the index cards very quickly too because there were just too many people.

Anyway I looked up the Maggies and there they were. There was MAD MAGGIE who must have also been Mags35 at some time. and she was in England.

There was also a Maggie May who was in Florida. She was Maggie Mae originally but had to reregister or something.

I sometimes made a few notes on the cards so I could remember something about each person without having to look through a lot of earlier posts and the Profile. I didn't realize then that there were people who didn't like to have their information looked at but I never understood that. If they didn't want their information out there for others to see, why did they put it there?

I'll probably get reamed for having these cards but as a former teacher, I'm in the habit of trying to treat each person as an individual, not just a name out in cyberspace. I still think there's something to be said for that idea.

Also, I came to the Internet and message boards after about 20 years with MS that had led to a more and more isolated life, due to mobility limitations. For me it was astonishing to find real people out there who were right on my computer screen. I had had only very limited experience with message boards at that point--just occasional participation in a book discussion board with only about 20 regular people on it.

[flatcap]

I'm glad you stopped collecting the index cards.

You don't have my picture, so my card would no doubt be so full of dart holes that it would look like a worn out pin cushion. Lol

[agate]

<sup>That index card habit ended only a few months after it began.

flatcap, I'm not much good at darts and so you don't have to worry. I probably couldn't have aimed the darts to hit the card.</sup>