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

[flatcap]

This bump's for you, soul.

Hope things are going better for you.

[Virginia]

Soul, we would love to hear from you and find out how you are doing.

[flatcap]

Hi, soul.

Bumping your thread again. Hope you are doing well.

Check in some time. We could use your support.

[soul]

Hello, I am sorry I've been away for so long but it's been a really screwed up year and how ever long. It's been really upsetting trying to figure out what happened when I took part in the PRISIMS Trials and honestly most of it I couldn't remember, the flashback unfortunately led me to some answers as well my X-Wife helped to fill in some blank spot, then research into I(FN) 1b, I still have flash backs and at times clarity into what happened.

So in 1993, I stated Rebif at low dose that being 22 mgs within a year of my starting there was a hideous accident that took place to my X-wife that profoundly me and my mental health I started going Manic this was in year 2 of the PRISIMS trials and within a year or so I went up to 44 mgs, that increased the mania, this went on for over 18 years, according to the research when "mania"
happens the subject should be taken off the drug immediately. The journals I kept, did not reflect my mental state, and I have to admit that what I can remember I became a different person I became a very vicious person and a terrible person to be around, as I was so nasty. When I talked to my X-wife, she confirmed as to me who I became .a mean person who would fly off the handle over anything.

I should have never been put on the drug due to genetics, when I was recruited into the trials there were questions that went asked, so I was left with myself and my partner at the time going through manic episodes, and honestly it was pretty much 24/7, I honestly believe the researches knew because I my wild emotional swings I lived like this for over 20 years, I understand why my X wanted a divorce, if I were now on the receiving end of the hatred that was oozing out of me in those day's I would have cut and run immediately, as I was so unstable not dangerous just mean.

It has been hard trying to figure this out, many tears and crying, but I do understand how and why this happened it still hard and really doesn't stop, since all this started I have worked with my doc. during our last meeting I looked at him and said " I don't want to see a neurologist again, as my last time in a MRI I had a break down after leaving, any appointment I have had with a neurologist I always leave in tears, so no more MS appointments, when I had my last neurologist appointment, I pretty much attacked the "Neurology Industry" even this happened years ago, as I said previously at least I think I did , the Neurologist said "We have no record of you having MS" so those trials are still locked.

Damn the pharmaceutical industry, As I said I still live with the flashbacks, and what that drug does to, by the way "IT DAMAGES ALL ORGANS IN THE HUMAN BODY" unfortunately that's true according to peer reviewed science and they have known this for years

I have to stop for now as I find all this upsetting and depressing, I will come back and try to finish

soul

[agate]

soul, it is so good to have news of you--and it sounds as if the time you've written about in your post was in the past---? Things might be better now, more on an even keel?

I've been seeing your posts for something like at least 20 years and find it hard to believe that you were the "vicious" person you describe yourself as being. Sometimes we get too down on ourselves, don't you think? That old saying, " I wouldn't belong to a club that would have me as a member"?

And how is it that the neurologist can say there is no record of your having MS? I've noticed that medical providers nowadays are saying they don't keep records going back very far--I've heard a few years or even just a year. Maybe they destroyed the record because they have a policy of not keeping them very long? It's a ridiculous policy and potentially quite harmful to patients. The provider can always say what you were told: "We have no record of your having MS." They can deny it and wash their hands of you that way. Or they can insist on starting all over and putting you through a lot of diagnostic tests (at considerable expense to you and your insurance).

I'm afraid the moral of this is that we should always hang onto all of our own medical records, which we should get from the doctors shortly after seeing them or having anything done.

The people who were in charge of the trial you were in may still have a record of your MS if you have a way of contacting them.

Anyway, soul, you're always welcome here.

[agate]

Bumping this up

[soul]

Hello Agate, it all comes down to my living in Canada & the US, and the records or I should say Data, when that was said no record of MS, I looked at her and said do you know of a Dr..so& so
she said yes then I mentioned the trials and Dr so&so he was the chief investigator of the trials, she looked shocked as I believe she respected this person, I looked at her and said I am one of his failures. Believe me any MRI's I have had since then once I was in the US I have copies, when I got back to Canada a couple years later I went back to the MS clinic that was the research clinic I had been involved with in Canada I was still on drug and had a breakdown in the clinic, as soon as they saw me I was rushed away to another office with familiar faces and then taken to the occupational therapist. At the time I didn't what was going on and why I was experiencing this breakdown. Now I live with the scattered memories and the flash backs of manic episodes, the last exchange of correspondence I had with my X was a question that I had been terrified to ask her, oh yea she is a researcher herself, was there anytime that you thought I was reacting to the drug as in a bad reaction to the drug. Honestly I was frightened she would say yes, she said no not at anytime. She has 13 years of University 3 degree's and is a tenured Professor and was when all this went down but being a true believer in the sciences and the Hippocratic Oath Do no harm and truly believed everybody in the Medical position had the same morals. I believe or should I say she would stay at the U as much as possible to stay away from the toxic environment at home do to my manic episodes. I was not a nice person in fact one would say a mental basket case aka pr!ck

soul

[agate]

I dunno but I've known a lot of people who carry around a lot of guilt about a former relationship, usually an ex-spouse. It seems to be impossible to end a relationship or to see it end without carrying away a ton of self-blame. The other person is undoubtedly feeling the same sense of failure even though you're probably not being told about it.

I don't like to think too much about all of the people I've hurt by not understanding where they were coming from or by neglecting them when they needed me or by saying or doing something thoughtless. The thing is that there's nothing I can do about all of those bad mistakes now. All I can do is try harder not to make too many more mistakes.

[soul]

This really has nothing to do with my X other then she was there and I would never treat any human the way I treated her we have been divorced for year's. It has to do with me drug trials a pharmaceutical company and a Neurologist and their lack of due diligence

[agate]

I've heard of quite a few people who have had bad experiences with the MS drugs. It makes a person wonder if the medical profession was so overjoyed at having something for MS at last that they were too eager to get everyone on these drugs and then neglected to be watchful enough. I understand they found it discouraging to have to diagnose someone with MS and then say (as my neuro did), "You'll just need to learn to live with it as there is nothing I can offer." Somebody really dropped the ball in your case, soul.

[Virginia]

I am so sorry Soul that you have had to live with the aftermath of something going wrong, especially since you were trying to do good by allowing the pharmaceutical company to try and prove their drug did good and no harm.

I have now aged out of being in drug trials, but when I still could I tried to stay away from the doctors who took part in those trials. I always believed they made a lot of money from the drug companies and therefore were very biased.

Having stated the above I have heard of many people who have benefited from taking part in MS drug trials.

Are you now able to live a normal life without any leftover effects from being in the PRISM trial?

[soul]

Not really Virginia, it seems my endocrine system is pretty much shot and has been for quite a few years,pretty much all my teeth are gone, they started falling out about 2 1/2 years after I discontinued the drug. But it is what it is and I get to live with the memories, and no need to say sorry Virginia it's just life
soul

[agate]

soul, do you think there could be a connection between losing so many teeth and the drug you'd been taking?

One reason I went off glatiramer (Copaxone) this time was wondering if it might be causing slow healing of wounds. When I fell a year ago, the head wo und took entirely too long to heal. It was a type of wound that does take quite a while to heal but months and months?

I stopped taking that drug in March. A couple of weeks ago I had a slight cut on my hand and I noticed that it didn't take an abnormally long time to heal. Maybe it's because I've been off that MS drug for months now. Still, age and the diabetes might have something to do with slow wound healing. I just don't know but they really don't know so very much about what these drugs do to people.

There are fads when it comes to treatments. Maybe the MS drugs will turn out to be just another fad, and in a couple of decades there will be research articles about how there is no evidence that they work and how they've been abandoned.

Anyone ever hear about hyperbaric oxygen treatments for MS? Now there are articles about how there is no evidence that they work and how they've been abandoned. Back in the 1980s they were the new exciting thing.

[Virginia]

It could be Soul that you have an allergy to Rebif or something in it. I have a problem saying that MS drugs that have been around for 25 and a couple for 30 years are a fad. Many of them have proven to help people with MS stay out of Nursing Homes, wheelchairs and things like that. We do know they are not for everyone, but for some they have been a God send.

I just have a feeling that Rebif was not for you and definitely was not good for your body. It is for certain that Tysabri has proven to be extremely bad and in a few cases even deadly for some, and yet there are some who wouldn't be without it.

Hyperbaric oxygen treatments, to my knowledge, were never tested by researchers or approved by the FDA as the MS drugs have been.

One problem, as I see it, you were not being seen often enough by a doctor or they were not recording it accurately. When you were in the states didn't you return to Canada in order to be able to continue getting Rebif. I know you received it for some time here in the states on compassionate grounds, but didn't that time run out and you returned to Canada in order to keep receiving it? My memory is not all that great right now, but if this is true what happened to the records the doctor here in the states should have? If they say they do not have them, why not?

I am aware all of this is not that simple. You really need a lawyer to check on all this, but if you are like me money would be an issue in getting a lawyer.

I think first of all, maybe it would be a good idea to get your teeth fixed. I am in the process of doing that now, and I hate that you are facing it. However your teeth can have a large effect on your overall health.

[soul]

I will reply I am busy and honestly have to give some thought to the questions I have been asked, and plus it's Pool night, one answer Virginia I have 3 teeth the rest either fell out or crumbled believe me I saw dentist's and tried to look after my teeth, now its down to look after that 1 tooth
As one tooth rules them all < Lord of the rings humour